Stories of People Dealing with Chronic Illness

Why am I so depressed? Am I Crazy?

I’ve been going out of my mind this week. Feeling worse than ever, foggy, yucky, and helpless. Tired all the time and pain all over not just my back. Am I going crazy? For many people, the stress and depression resulting from chronic pain can become consuming, and have the potential to significantly worsen and prolong the pain. Increased pain can, in turn, lead to increased stress and depression, creating a cycle of depression and pain that can be difficult to break. I’ve been writing a lot about the physical pain but what about mental pain? Let’s explore this together

Among chronic pain sufferers, the prevalence of depression or anxiety is much higher than in the general population. About 50 percent of those with chronic pain suffer from some kind of mental illness.

Disorders such as depression and anxiety can be present both before and after pain onset, raising the chicken-egg question of whether mental illness puts you at risk for chronic pain or whether chronic pain is psychologically damaging.

Researchers tend to view the relationship between mental illness and chronic pain as an interaction between biological, psychological, and social influences. For those in chronic pain, the brain misinterprets sensations from affected areas. The person is left constantly anticipating pain, leading to stress and anxiety. Increased stress, along with disturbed sleep, social isolation, and depression about one’s life often leaves the sufferer vulnerable to mental illness. -https://www.psychologytoday.com/blog/talking-about-trauma/201407/managing-chronic-pain-

Those who suffer from anxiety or depression often withdraw socially, becoming irritable to those around them. This loss of social support, interaction, and activities often exacerbates the symptoms of anxiety or depression, further accentuating pain. Since chronic pain often has no clear physical cause, those who suffer from it feel stigmatized, as others may believe the pain is “all in their head. Stigma can lead to anxiety, shame, and doubt, which can contribute to feelings of worthlessness and hopelessness.

Chronic pain and invisible illness can be incredibly isolating, sometimes in obvious ways but other times, it’s far more insidious or subtle. Just as our pain and symptoms are mostly invisible, we too can feel as if we’re living behind a silent divide, isolated from life by an invisible window of pain. When pain never pauses, it can make it hard to feel connected—even to those we love.

Why Chronic Pain is So Lonely

From being isolated in our moment-to-moment pain experience — which is so far removed from that of a healthy person and frequently misunderstood — to feeling detached from the ‘living’ part of life because of our physical limitations and disability. The overwhelming nature of chronic illness and pain coupled with isolation can swiftly turn into loneliness.

“A huge part of illness is isolation,” says Wayne Connell, the founder and president of the Invisible Disabilities® Association. This isolation is magnified because of the pain, and its own essential management; because of the search for things that might help, and the heartache when they don’t; because of the unpredictable flares that disrupt what slender life remains; and of course the because of seemingly endless losses, fears, and anxieties that whirl in our minds.

Turning Inward—Withdrawing from the World

When feeling so detached, distanced, and cut-off from even those we love the most, we may withdraw from the world in an effort to cope, further isolating ourselves. “Pain inverts our normal perspective,” says David Biro.

“Instead of reaching out to other people in work or play, we turn inward and self protective. This is an instinctive, understandable response. Something is wrong inside of me and so I must attend and focus on the threat and make sure it doesn’t get any worse.”

It’s natural to feel a level of disconnection when your experience is so vastly different from all those around you. It’s a self-protective means of responding to the challenges you face in living with complex illness and chronic pain.

“When chronic pain gets severe, many patients withdraw, sometimes even from their families,” says mass media fellow and writer Eleanor Nelsen, whose sister Sally has chronic pain. “Sally says that she’s constantly nervous, afraid to accept invitations or do things that she loves—like riding horses—in case it makes her arm even worse.”

Distance from Disbelief

Breaking a limb or recovering from a surgical procedure may isolate someone for a few weeks but once recovered, life returns in its full unaltered splendour. It’s also far easier for others to accept this as ‘illness’ or ‘injury’. It’s only when the pain persists, and we don’t improve that the great divide of disbelief which invisible illness brings comes into full effect.

The longer that process, the greater the difficulty in reintegrating yourself into a world that has little concept of what you are truly going through, much less how to connect with you now because of your chronic pain and illness. When we are judged or our illness questioned by even those close to us, it creates another kind of isolation — that of being so misunderstood.

It’s not that they need know exactly what we’re going through — we don’t want pity, only understanding — but if a divide of doubt widens, and our relations perhaps distance themselves, this magnifies the loneliness. On many levels it’s understandable, after all, without direct experience, of course others cannot comprehend but without any comprehension, the gap of isolation further increases as those who are reluctant to understand are let go of or simply slip away.

Feeling Lonely in a Crowded Room

Pain can be a lonely experience even in company. “While the pain inside looms so large for the person experiencing it, it is often invisible to the person viewing it from the outside, a doctor, a spouse, or a friend. And when there is nothing to see on the surface, in the case of migraine or neuropathic pain, the doubt only increases,” says David Biro.

“Even if the outsider believes the sufferer, it is difficult for him or her to imagine what it’s like or how severe it is (how easily the pain-free forget past pains). When you combine a sufferer who sees only his pain with an outsider who can’t see it at all, the result is a widening of the normal barrier that exists between people. A great wall has suddenly sprung up.”

This of course further displaces us from day-to-day living and normal life, in turn magnifying the isolation but that can become painful too. Even when in the finest company in the world, we are always behind pain’s invisible window, which creates its own kind of isolation and loneliness. That of being lonely even in a crowded room.

“Clearly, isolation is never a good thing for long periods of time but I understand why people isolate themselves during their darkest hours of chronic pain,” says chronic pain patient and advocate, Jessica Martin. “I remember thinking: what is worse being alone and in pain or being around people but feeling totally alone?”

Isolation Through the Stress of Constant Pain

When isolated and in pain, our mind is often our own worst enemy, especially when bottling up how we really are feeling both physically and mentally.  When pain becomes chronic, with no clear end in sight, it is immensely psychologically debilitating in way that few other conditions are, while being entirely unsharable.

“In fact, it’s often the most debilitating component of many diseases,” says Yves De Koninck, professor of neuroscience at Université Laval, Canada. “People can find a way to live with the other challenges of painful conditions like arthritis, cancer, even paralysis but if you actually ask the patient, their number-one concern, the one thing that they want us to cure, is the pain.”

Relentless pain is stressful, exhausting, and incredibly isolating. “When we appreciate this essential feature of pain – that the loneliness can hurt as much as the “burning” or “stabbing” quality, and that the longer it persists, the worse the entire pain experience becomes — we must recognise that there is more to do than surgery or analgesics,” adds David Biro.

“Patients tend to express that they have lost their sense of direction to life. They are stuck. These problems cause stress,” says Murray J. McAllister, PsyD, executive director of the Institute for Chronic Pain. “These stressors can make pain worse because stress affects the nervous system. It makes the nervous system more reactive and you become ‘nervous.’ Chronic pain causes stressful problems, which, in turn, cause stress that makes the pain worse.”

Isolation Through Changing Roles

Another way that pain can become isolating — and also cause us guilt — is through the changing roles that it brings. It’s heartbreaking not being able to be who we are, express who we are, much less care for and love those around us how we once did before the pain. Aside from feeling like we’re a burden or letting others down, it’s immensely isolating being unable to live a normal life.

“Chronic pain can affect the roles people have. They miss out on children’s activities, family functions, and parties with friends,” says Murray J. McAllister. “As a result, many people struggle with guilt. Guilt isn’t the only emotion that is common to living with chronic pain. Patients tend to report a combination of fear, irritability, anxiety and depression.”

Isolation From Physical Limitations

Of course our isolation wouldn’t be so great were we able to get out, and see others more but many with chronic pain have chronic illnesses with long lists of coexisting symptoms, which further magnify the complications. Temperature sensitivity for instance can make weather that is cool to a healthy person, painfully cold to a pain patient.

Another reason we may not be able to go out is that it is simply too painful before, during, and afterwards, particularly with conditions that cause allodynic pain, and hyperalgesia, including CRPS. At its worst, it can mean being entirely unable wear clothes because of the pain of them touching the skin.

Noise, lights, even people walking past causes a surge in intensity of the pain of chronic conditions with central sensitisation, inclthat takes a long time to return to ‘normal’ pain levels. If outside, even a breeze can be excruciating. “For some it is difficult to get out of the house,” says pain patient and advocate Tracy Rydzy.

“I am able to go to the gym for physical therapy, I can spend time with friends and family, but like most, my time is limited. My back has a time limit for standing, sitting, walking, so things like travel, or a long event are difficult.” No matter the cause of the pain, unless we use pacing and manage it, especially if going out, it can also result in a painful flare, which makes it all the harder to deal with if every event ends like this.

“Sometimes being with others is wonderful but then the recovery is painful and can perpetuate the cycle of depression, isolation and loneliness,” says Tracy Rydzy. “Going out for a little while doesn’t always help the loneliness, especially if pain increases when returning.” Though even with careful pain management, we cannot leave our homes as much as we long to.

Other complicated and severe neurological reactions if exposed to the chemicals in perfumes for instance, can cause people living with Multiple Chemical Sensitivities (MCS), or Toxic Encephalopathy, migraines, vertigo, pain, memory loss, and a worsening of the reactivity of the condition with each reaction. This naturally leads to more time spent cut-off from the world.

The Loneliness of Letting Go of Who We Used to Be

When pain becomes chronic, and progresses, it can feel as if our slender grip on life has loosened, and with it, our ability to be who we are. This divide only increases the more we focus on the ‘former’ us or compare it with what we can do now but because that in itself becomes its own source of sadness. It’s easy to feel like pain and illness defines us, especially when it affects everything in life.

Letting go of who we used to be, or rather, letting go of expressing who we are in the way we used to, and finding new ways to do what we love in spite of chronic pain is healing. It may not help the sadness but acceptance of what is can be a useful tool in itself. It’s already hard enough living in pain. Try not to default to unhelpful thinking, which only serves to make you feel worse, and even more isolated.

“As the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer Ph.D., author of Isolated and Alone: Therapeutic Interventions for Loneliness, and psychologist specialising in grief and loss.

The Loneliness of Always Hiding Our Pain

The very nature of pain is to get our attention. To say that there’s danger, injury, something wrong, and consequently the idea of attempting to ignore that signal, which seems to then grow all the louder for it, and to continue as if there is no danger, as if there’s no pain, is a very natural response to what is essentially, almost impossible.

It’s human nature to react to pain. Yet when we are in company, we are presented with another challenge, that is, going against our own instinctive nature. This also creates isolation and internal tension because of the invisible divide. We may become so used to hiding this pain that even when we do need show it — in the doctor’s surgery for instance — it’s almost impossible to truly convey.

With our loved-ones too, we hide the true extent and depth of the pain. After all, no one likes to see someone they truly care about in pain but this can widen the gap of both understanding, and isolation too. We may long to do things with our friends or family but pay so dearly later if we pretend things are not as severe as they actually are in an effort to join them.

Anxiety, Fear & Chronic Pain

It’s natural to feel anxious or nervous before events or any action that may, or indeed will, cause you increased pain but sometimes the fear of pain actually creates pain. If I’m about to make a trip, whether to a doctor or a longer journey, I know it will flare-up the pain during and after, perhaps for days so anxiety swiftly appears. Then, because of increased tension both physically and emotionally, the pain ironically goes up long before the event.

When you know the world to be a very painful place, with you at the mercy of such whims as that of the weather instantly worsening your pain, people who disbelieve you and cause additional stress, or the most seemingly innocuous things, which are intense triggers for your pain, it becomes all the more understandable why anxiety or fear appears.

 Someone knocking into you for example, may be gentle and swiftly forgotten by a healthy person but if you have a severe pain condition which has sensitised your body and centralised your pain, a simple knock can cause a flare-up of chronic pain. It’s little wonder we can sometimes feel fearful or anxious.

“Hyperalgesia is often a major component of chronic pain. It means that people with chronic pain have to be unceasingly alert,” says Eleanor Nelsen. “Sally says, before she hurt her arm, hot coffee sloshing onto her hand might have hurt for a few seconds. Now, a careless moment like that means days of burning pain.” When pain reacts in such a way, it strongly suggests that changes in the nervous system have migrated to the spinal cord, leading to central sensitisation.

Isolation & Depression

Isolation and loneliness can also lead to depression, or worsen existing depression, making finding support all the more vital. On your own it can be difficult to keep perspective — especially when alone with your thoughts — which can naturally magnify in solitude, especially when combined with the distress of chronic illness and pain when it has so drastically shrunken your life.

Yet the nature of depression can make it difficult to reach out. Sometimes even just the thought of doing so, even to close family and friends, can feel overwhelming. You may have always been ‘strong’ so asking for help just doesn’t come naturally. You may even feel ashamed to need help, even though you live with debilitating pain and chronic illness and there is nothing to feel ashamed for.

You may also feel too fuzzy from medication and brain fog, too exhausted, or too pained-up to talk, much less reach out; it may have been so long that you feel guilty for neglecting a friendship, regardless of this being due to circumstances far beyond your control. Remind yourself that this is depression speaking, not you.

Those who love you generally want to help but often have little idea on how. It’s also worth noting that we are so frequently hardest on ourselves. Try to speak to yourself as if you were your friend going through this. Ensuring it’s in a self-compassionate voice, and be supportive to yourself instead of internalising anger, or focusing on the losses and pain.

For tips on using pain psychology to help you feel less isolated, read more here: How to Use Pain Psychology to Reduce Depression, Anger & Guilt; Tools to Cope With the Stress of Chronic Pain & Manage Difficult Thinking

Chronic Illness is a Full-Time Job

Aside from the unpredictability of chronic illness, another reason we are isolated is as we have such slender limitations of time during which we can get out and see others. It is not only the pain or symptoms themselves but the management of it. A phrase that is popular at the moment is that ‘everyone has the same 24 hours in their day’, which is simply not true for those with chronic pain and illness.

If we do not manage our pain, pace, and use everything that works for us personally, we flare-up, leaving even less time for the ‘living’ part of life. “There is nothing wrong with putting yourself first. Accepting and managing chronic pain naturally is a full time job. I had a planner for each day which included every tool I would need to utilize in my day to day life to manage pain naturally,” says Jessica Martin.

“You cannot help anyone else until you are able to help yourself. You cannot truly love others if you do not love yourself. Stop feeling guilty for putting your well being before the well being of others.” Managing your chronic illness and pain is not selfish, it’s essential, and unless you do, it will manage you all the more.

Reconnecting with Loved-Ones

Even though I’m a complete introvert, ever-content in solitude, when there is little or no contact with others, for example during winter when the pain is its most fierce, making the chances of getting out or connecting with others all the more slender, that isolation becomes its own source of pain, and I imagine, for extroverted pain princesses and warriors too, that pain of isolation, all the greater.

You may have retreated from even your most treasured relationships but reconnecting with loved ones, and being a part of social activities, even if its incredibly infrequent, is an essential part of coping. It’s natural to retreat, especially when depressed, but just being around other people can make you feel better and help you cope.

Creative Connecting: 8 Ways to Reconnect with Chronic Pain

Try to ensure you connect with others, even if it’s on Skype or FaceTime, even if it’s just one person in a day. Making just teeny connections on a daily basis goes a long way in making you feel less isolated.

• Make small but regular connections with others every day, even if it’s just a text or message via Facebook, WhatsApp, Twitter. Use email, text,social media, and any other means to just stay in touch.

• Instead of only turning down every social activity because they’re beyond your physical abilities, talk to those you care for, and see if you can arrange social activities that you can do on the better days — it may help to make a list — so you can still see loved-ones, even it’s only for a short amount of time.

• Watching a film with a friend from your bed or living room for example; or going out with a whole lot of cushions, supports, heat pads, and whatever else you need to be able to enjoy a little time outside.

• Perhaps you love theatre but haven’t been able to go in years. See if you can attend a play in two parts if that would help you, or ask the theatre if you can lie down during the interval. If they can accommodate you, and you explain your situation, this risk in reaching out may give you an outing with a friend or few that you’d long-since concluded as impossible but unless you ask, you won’t get.

• You may need to get creative, and always plan ahead.

• If that’s far too grand a plan, it may be a matter of changing the time of day when you connect with a friend or relation to a time when your pain and symptoms tend to be less fierce, or reducing the amount of time you’ll be with someone or out to something more realistic.

• Although not strictly connecting with others, music has the power to lift your spirits, help you cope with chronic pain, and the ability to make you feel less lonely or isolated. If you cannot connect, find a little comfort in listening to music.

Know That You’re Not Alone

“Simply listening can help by showing that there is someone who hears you, that you are not alone,” says David Biro. David goes onto say that in our relations with others, making our pain experience more sharable can help us feel less isolated as well as deepen the understanding of loved-ones.

“Better yet, figure out ways to make pain more communicable and sharable — through words or pictures or whatever other kinds of language can be summoned for the task — so that person on the other side of the wall is not only present but actually begins to understand what you are feeling. In this sense language can be as soothing as our most powerful medicines.”

• Join an Online Support Group — If like so many with invisible illness and pain, your relationships are negatively affected, consider joining a community who understands what you are going through. Support groups validate your feelings, letting you know that you are not alone, and with so many online, you can connect even if hugely limited by pain. You can also use your experience and expertise to help others and make new friends.
• Talk to a Therapist — Sometimes when it all gets too much it can be easier for us to unburden ourselves with strangers rather than those closest to us. Though it’s obviously far from free, even a a few sessions with a psychologist or therapist who understands the all-pervading nature chronic pain has on your life, can bring both comfort and coping skills. Even if you’re housebound, many therapists offer sessions via Skype or FaceTime. Look for a therapist who specialises in helping patients with chronic pain.

It’s easy to feel like the rest of the world doesn’t understand how isolated or limited we are, especially when living with a complex chronic pain condition that’s as debilitating as it is mystifying. Yet there are so many of us in pain, our journeys may be isolated but we’re united by our courageous community.

Put Your Health First [Especially If Others Don’t Understand]

“Even now, there are days that can go by that I truly have to just shut the outside world out. Sometimes I fall off track with my chronic pain management and forget to meditate or practice many of the tools I need to survive a happy life. Sometimes, I just need time to be alone because I too go through rough times,” says Jessica Martin.

I had a friend who would only want to catch up if it were a mammoth session, hours of talking, which is naturally exhausting when you’re in a ton of pain. As I flared-up after each visit, this became unmanageable. If you have a friend who refuses to accept your limitations, it’s heartbreaking but you have to put your health first. Even if at first they do not understand it, if they are true friends, it should not matter.

“It took me way too many years to understand the fact that I had to put my health and chronic pain management first,” says Jessica Martin. “I always wanted to please others but that always backfired too. If you need a break from the outside world and madness do not feel guilty. No one asks for chronic pain and no one gets flowers for chronic pain. Give yourself some flowers and put yourself first: greatest gift you will ever receive.”

http://princessinthetower.org/the-isolating-loneliness-of-chronic-pain-invisible-illness/

I know this a lot of information and thank you for taking the time to read. Hopefully we all can understand we are not going crazy. What we as chronic pain sufferers go through is real and with support we can get through this together. Please feel free to leave a comment or contact me.

-heartandsoulofhope-

Kris Siegler

Supporting Others Through Bereavement, Grief, and Loss

A friend of mine just lost her husband yesterday morning who lost his battle of stomach cancer. Myself and family and friends of Marie had been praying for a recovery but it just didn’t happen. I tried my best to offer my comfort and support but found it difficult to know what to say.  I was afraid of intruding, saying the wrong thing, or making her feel even worse. I felt there’s little I can do to make things better and powerless to make things better for her. I found this helpful and wanted to share:

What you need to know about bereavement and grief

The death of a loved one is one of life’s most difficult experiences. The bereaved struggle with many intense and frightening emotions, including depression, anger, and guilt. Often, they feel isolated and alone in their grief, but having someone to lean on can help them through the grieving process.

Don’t let discomfort prevent you from reaching out to someone who is grieving. Now, more than ever, your support is needed. You might not know exactly what to say or do, but that’s okay. You don’t need to have answers or give advice. The most important thing you can do for a grieving person is to simply be there; your support and caring presence will help him or her cope with the pain and begin to heal.

Understanding the grieving process

The better your understanding of grief and how it is healed, the better equipped you’ll be to help a bereaved friend or family member:

There is no right or wrong way to grieve. Grief does not always unfold in orderly, predictable stages. It can be an emotional rollercoaster, with unpredictable highs, lows, and setbacks. Everyone grieves differently, so avoid telling the bereaved what he or she “should” be feeling or doing.

Grief may involve extreme emotions and behaviors. Feelings of guilt, anger, despair, and fear are common. A grieving person may yell to the heavens, obsess about the death, lash out at loved ones, or cry for hours on end. The bereaved need reassurance that what he or she feels is normal. Don’t judge them or take his or her grief reactions personally.

There is no set timetable for grieving. For many people, recovery after bereavement takes 18 to 24 months, but for others, the grieving process may be longer or shorter. Don’t pressure the bereaved to move on or make them feel like they’ve been grieving too long. This can actually slow the healing process.

What to say to someone who has lost a loved one

It is common to feel awkward when trying to comfort someone who is grieving. Many people do not know what to say or do. The following are suggestions to use as a guide.

• Acknowledge the situation. Example: “I heard that your_____ died.” Use the word “died” That will show that you are more open to talk about how the person really feels.
• Express your concern. Example: “I’m sorry to hear that this happened to you.”
• Be genuine in your communication and don’t hide your feelings. Example: “I’m not sure what to say, but I want you to know I care.”
• Offer your support. Example: “Tell me what I can do for you.”
• Ask how he or she feels, and don’t assume you know how the bereaved person feels on any given day.

The best way to help a grieving person is to listen with compassion

Almost everyone worries about what to say to a grieving person. But knowing how to listen is much more important. Oftentimes, well-meaning people avoid talking about the death or mentioning the deceased person, but the bereaved need to feel that his or her loss is acknowledged, it’s not too terrible to talk about, and his or her loved one won’t be forgotten.

While you should never try to force someone to open up, it’s important to let the bereaved know he or she has permission to talk about the loss. Talk candidly about the person who died and don’t steer away from the subject if the deceased’s name comes up. When it seems appropriate, ask sensitive questions—without being nosy—that invite the grieving person to openly express his or her feelings. Try simply asking, “Do you feel like talking?”

Accept and acknowledge all feelings. Let the grieving person know that it’s okay to cry in front of you, to get angry, or to break down. Don’t try to reason with him or her over how he or she should or shouldn’t feel. The bereaved should feel free to express his or her feelings without fear of judgment, argument, or criticism.

Be willing to sit in silence. Don’t press if the grieving person doesn’t feel like talking. You can offer comfort and support with your silent presence. If you can’t think of something to say, just offer eye contact, a squeeze of the hand, or a reassuring hug.

Let the bereaved talk about how his or her loved one died. People who are grieving may need to tell the story over and over again, sometimes in minute detail. Be patient. Repeating the story is a way of processing and accepting the death. With each retelling, the pain lessens.

Offer comfort and reassurance without minimizing the loss. Tell the bereaved that what he or she is feeling is okay. If you’ve gone through a similar loss, share your own experience if you think it would help. However, don’t give unsolicited advice, claim to “know” what the person is feeling, or compare your grief to his or hers.

Comments to avoid when comforting the bereaved

• “I know how you feel.” One can never know how another may feel. You could, instead, ask your friend to tell you how he or she feels.
• “It’s part of God’s plan.” This phrase can make people angry and they often respond with, “What plan? Nobody told me about any plan.”
• “Look at what you have to be thankful for.” They know they have things to be thankful for, but right now they are not important.
• “He’s in a better place now.” The bereaved may or may not believe this. Keep your beliefs to yourself unless asked.
• “This is behind you now; it’s time to get on with your life.” Sometimes the bereaved are resistant to getting on with because they feel this means “forgetting” his or her loved one. In addition, moving on is easier said than done. Grief has a mind of its own and works at its own pace.
• Statements that begin with “You should” or “You will.” These statements are too directive. Instead you could begin your comments with: “Have you thought about…” or “You might…”

Offer practical assistance

It is difficult for many grieving people to ask for help. They might feel guilty about receiving so much attention, fear being a burden, or be too depressed to reach out. You can make it easier for them by making specific suggestions—such as, “I’m going to the market this afternoon. What can I bring you from there?” or “I’ve made beef stew for dinner. When can I come by and bring you some?”

Consistency is very helpful, if you can manage it—being there for as long as it takes. This helps the grieving person look forward to your attentiveness without having to make the additional effort of asking again and again. You can also convey an open invitation by saying, “Let me know what I can do,” which may make a grieving person feel more comfortable about asking for help. But keep in mind that the bereaved may not have the energy or motivation to call you when he or she needs something, so it’s better if you take the initiative to check in.

Be the one who takes the initiative

There are many practical ways you can help a grieving person. You can offer to:

• Shop for groceries or run errands
• Drop off a casserole or other type of food
• Help with funeral arrangements
• Stay in his or her home to take phone calls and receive guests
• Help with insurance forms or bills
• Take care of housework, such as cleaning or laundry
• Watch his or her children or pick them up from school
• Drive him or her wherever he or she needs to go
• Look after his or her pets
• Go with them to a support group meeting
• Accompany them on a walk
• Take them to lunch or a movie
• Share an enjoyable activity (game, puzzle, art project)

Provide ongoing support

Grieving continues long after the funeral is over and the cards and flowers have stopped. The length of the grieving process varies from person to person. But in general, grief lasts much longer than most people expect. Your bereaved friend or family member may need your support for months or even years.

Continue your support over the long haul. Stay in touch with the grieving person, periodically checking in, dropping by, or sending letters or cards. Once the funeral is over and the other mourners are gone, and the initial shock of the loss has worn off, your support is more valuable than ever.

Don’tmake assumptions based on outward appearances. The bereaved person may look fine on the outside, while inside he or she is suffering. Avoid saying things like “You are so strong” or “You look so well.” This puts pressure on the person to keep up appearances and to hide his or her true feelings.

The pain of bereavement may never fully heal. Be sensitive to the fact that life may never feel the same. You don’t “get over” the death of a loved one. The bereaved person may learn to accept the loss. The pain may lessen in intensity over time, but the sadness may never completely go away.

Offer extra support on special days. Certain times and days of the year will be particularly hard for your grieving friend or family member. Holidays, family milestones, birthdays, and anniversaries often reawaken grief. Be sensitive on these occasions. Let the bereaved person know that you’re there for whatever he or she needs.

Watch for warning signs of depression

It’s common for a grieving person to feel depressed, confused, disconnected from others, or like he or she is going crazy. But if the bereaved person’s symptoms don’t gradually start to fade—or they get worse with time—this may be a sign that normal grief has evolved into a more serious problem, such as clinical depression.

Encourage the grieving person to seek professional help if you observe any of the following warning signs after the initial grieving period—especially if it’s been over two months since the death.

Difficulty functioning in daily life Extreme focus on the death Excessive bitterness, anger, or guilt Neglecting personal hygiene Alcohol or drug abuse

Inability to enjoy life Hallucinations Withdrawing from others Constant feelings of hopelessness Talking about dying or suicide

It can be tricky to bring up your concerns to the bereaved person as you don’t want to be perceived as invasive. Instead of telling the person what to do, try stating your own feelings: “ I am troubled by the fact that you aren’t sleeping—perhaps you should look into getting help. ”

Take talk of suicide very seriously

If a grieving friend or family member talks about suicide, get professional help right away. IN A LIFE-THREATENING EMERGENCY, CALL 911 OR YOUR COUNTRY’S EMERGENCY SERVICE NUMBER.

To learn more about the warning signs, see Suicide Prevention.

Supporting a child through bereavement

Even very young children feel the pain of bereavement, but they learn how to express his or her grief by watching the adults around them. After a loss—particularly of a sibling or parent—children need support, stability, and honesty. They may also need extra reassurance that they will be cared for and kept safe. As an adult, you can support children through the grieving process by demonstrating that it’s okay to be sad and helping them make sense of the loss.

Answer any questions the child may have as truthfully as you can. Use very simple, honest, and concrete terms when explaining death to a child. Children—especially young children—may blame themselves for what happened and the truth helps them see they are not at fault.

Open communication will smooth the way for a child to express distressing feelings. Because children often express themselves through stories, games, and artwork, encourage this self-expression, and look for clues in those activities about how they are coping.

How to help a grieving child:

• Allow your child, however young, to attend the funeral if he or she wants to.
• Convey your spiritual values about life and death, or pray with your child.
• Meet regularly as a family to find out how everyone is coping.
• Help children find ways to symbolize and memorialize the deceased person.
• Keep your child’s daily routine as normal as possible.
• Pay attention to the way a child plays; this can be one of a child’s primary ways of communicating.

What not to do:

• Don’t force a child to publicly mourn if he or she doesn’t want to.
• Don’t give false or confusing messages, like “Grandma is sleeping now.”
• Don’t tell a child to stop crying because others might get upset.
• Don’t try to shield a child from the loss. Children pick up on much more than adults realize. Including them in the grieving process will help them adapt and heal.
• Don’t stifle your tears; by crying in front of your child, you send the message that it’s okay for him or her to express feelings, too.
• Don’t turn your child into your personal confidante. Rely on another adult or a support group instead.

Related HelpGuide articles

• Coping with Grief and Loss: Understanding the Grieving Process and Learning to Heal
• Coping with the Loss of a Pet: Tips for Dealing with Grief After a Beloved Pet Dies
• Coping with a Breakup or Divorce: Moving on After a Relationship Ends

 

Resources and references

General information on helping the bereaved

Grief: How to Support the Bereaved – Learn how to help in the first few days, how to listen with compassion, comments to avoid, and practical help you can give. (Better Health Channel)

How to Help a Grieving Person and Things Not to Do – Gives practical guidance on how to support the bereaved through the grieving process. (Funeralplan.com)

How to Help a Grieving Person – Series of articles on bereavement support, including how to help parents, families, friends, and co-workers. (Journey of Hearts)

Coping with the Loss of a Loved One (PDF) – Information on the grieving process including what to say to someone who is grieving. (American Cancer Society)

Helping a grieving parent

Helping a Grieving Parent – Offers advice on how to comfort your surviving parent, while also dealing with your own grief. (American Hospice Foundation)

When an Employee is Grieving the Death of a Child – Helpful article on how employers can help a grieving employee who has lost a child. (The Compassionate Friends)

Helping a grieving child

Helping Your Child Deal With Death – Provides clear and simple suggestions for helping children understand and cope with the death of a loved one. (Nemours Foundation)

Guidelines for Parents to Help Their Children Through Grief – Tips on how parents can help and support children who are grieving. (American Hospice Foundation)

The Grieving Teen – Describes how teens grieve and how to help through peer counseling and grief support groups. (American Hospice Foundation)

Authors: Melinda Smith, M.A., and Jeanne Segal, Ph.D. Last updated: January 2017.

https://www.helpguide.org/articles/grief-loss/supporting-a-grieving-person.html

this blog is dedicated to those lost to chronic illness

-heart and soul of hope-

Kris Siegler

Success Story – the Good Times

Back to school – Went back  to school (2nd semester) today. My professor of my Effective Speaking class is a Pancreas Cancer survivor which is one of the most dangerous types of cancer because it progresses rapidly, and no method of early detection has been discovered it. Currently the five-year survival rate sits only at 6 percent. My professor stated he has felt lucky and very blessed he has survived. He teaches part time and during his spare he makes jam and gardens.

As part of the class we had to introduce ourselves, our major and and hobbies. I mention this blog, my CFS and chronic back pain, and that I created this site to share my story and support others going through their own chronic issues.

I was really proud to review my grades from last semester. With everything going on I am currently sitting at a 4.0 GPA. I hope to maintain this GPA as the spring semester ends. All in all, a good day.

Today i want to share some hope and support. There are going to be good days and bad days so stay strong. If you are ever feeling lost or alone and need support please contact me by clicking on the contact page or share your story. You are not alone.

-heart and soul of hope-

Kris Siegler

Frustration and Worry

James came back from the hospital but still no answers on how to fix his seizures. As I mentioned in my previous entry about the car accident James was in here is the picture of the back-end of the car.

That was 2010. The other driver rear ended James as he was stopped trying to make a left hand turn into our apartment complex. As you can see the car spun around facing the opposite way  and the back-end was completely crushed in. I saw James jammed into the steering wheel. It was an older car so no air bag but he was wearing his seat belt. The other driver had a scratch on his front end and was at the side of the street laughing and socializing  like this was funny to him.

Now the report from the hospital was a cracked tail bone and nothing else. James having back pain began physical therapy which did noting for relief. Now it’s the year 2013. James is at the dinner table when he had his 1st seizure. After to response for 5 minutes the ambulance was called. 101 emergency room visits regular doctors could not explain why or what it was. Visits to a specialist stating James has “New daily persistent headache” after complaint of a constant headache with no relief still does not explain the seizures. Another year and finally prescribed seizure medication has reduced the times James has had then but not eliminated them Added now are certain flashes of color and loud/piercing sounds. Now today the year 2017 doctors have a theory as to the cause but no solution for the “cure” yet.

I mention this to you now because once again he was just at the hospital and released with no plan of action to fix his illness other than see his regular doctor. It is an emotional drain to see your loved one go through this on a daily basis and feeling frustration and anger that the doctors cannot or will not help James. Doing what i can with my own CFS and chronic pain. Feeling helpless as I watch James have seizure after seizure. Unanswered questions and the wondering what the future holds is very scary for me.

Final note on this entry. I am reaching out to you today. If you have or known any similar experiences and have information to share, I encourage you to comment or use the contact page to reach me .

-Heart and Soul of Hope-

Kris Siegler

 

Everyday Challenges

James my husband was out getting bread and milk with his service dog Toto (picture below) who is trained to aide and alert others when James has a seizure. James and the dog was sent to the hospital via ambulance. They ran some tests and found some chemical imbalance so admitted him. He is currently in the hospital waiting for a neurologist to say it’s ok for him to come home. As I mentioned in my story this happens about half the time and as been going on for 5 years now. What we know so far is he may or may not have a pinched nerve in his back that was not caught from his car accident in 2010 that is causing the constant headache (even rest or medication gives no relief) which flairs that causes the seizure. Also certain high pitched sounds and bright colors triggers a seizure as well. Of course doctors are baffled so they stabilize him and send him home but we are still waiting for a “cure”.

Meanwhile I managed to pick up the living room load the dishwasher clean the counters and sweep the floor before my CFS and chronic back pain kicked in. I did have to get a chair to hand wash some dishes that couldn’t fit in the dishwasher. So I managed to do something today. My CFS has no cure and I did go to therapy to try and fix my chronic back pain caused by lower right side disk slippage 50 % and arthritics due to tiny bone fragments shattered right above the disk slippage. I did the recommended exercises when i heard a pop. I could not move and had to stay in bed. Since then my back has back has been worse than ever. So getting the work done that I did was a great accomplishment for me.

I hope this entry doesn’t appear to be complaining. This is not my intent. I wanted to share with you me experiences going forward both good and bad to let you know that if you or a loved one is dealing with a Chronic Illness you are not alone. I wish everyone reading this a great day and hope you continue to follow my story and share your own.

-Heart and Soul of Hope-

Kris Siegler

 

 

My story

Living with chronic illness and pain is something that isn’t easily understood by people who are not going through the same thing. Moreover, the effects of illness are an emotional and personal daily battle.

Many people have this notion that if you look fine, you are feeling good or having a good health day. Many also don’t realize that even when we say we are fine, we really are not. At times when I say I am OK, I really wish I could share with people who don’t understand my ordeal and how chronic illness and pain truly affect my life.

Every now and then, when I say I am OK or I am fine, I really mean to say:

I don’t have a lot of emotional support so I seek help in therapy and I look for solace with people that I love. These things have allowed me to a stronger person — both in conviction and in the ability to see past my limitations. So, yes I hurt both physically and emotionally but I have found strength I never thought I had.

“I am scared.” Not only dealing with my own chronic illness CFS (Chronic Fatigue Syndrome) with 50% slipped disk with arthritics in my lower right side. My husband has diabetes along with Syncope Seizures with constant New daily persistent headache, Chromes, and muscle lost in left hand. My son has Aspergers and Depression. I am scared  that my husband may have a seizure and never come out of it. I also know I will never return to perfect health. I worry about what the future holds and where I will be in 10 years or 20 years. I am only 45 so I have a long life with Chronic back pain and fatigue. I worry about how I will take care of myself if things get worse and who will take care of my kids. I have valid questions, but I know that these questions don’t have concrete answers.

Taking life one day at a time is all I can do and that is scary in and of itself. I will never be my former self, but I am working on maintaining some level of peace when it comes to my health. While I am scared, I try to focus on the here and now so that I can make the best of my life with chronic illness.

“Life is just not fair.” I am not always able to make plans because I don’t know if I will be able to follow through. I don’t know what the future holds because I have to take life as it comes. I can only be hopeful, and I am. Chronic illness has taken a lot from me, but I have taken a lot back.

No one said life was fair but it is worth living. While I truly believe that, I just sometimes want to vent and say that life just isn’t fair.

“It is not my fault.” Being sick is not my fault, but sometimes I feel like it is. I worked hard at every aspect of my personal life and professional life before illness and even harder after illness. I am a good parent, but sometimes I feel guilty they can’t have the parent that I wish they had. I am a faithful and loving spouse but often feel lonely and depressed watching my husband get worse every day with no means to help get him better. I have been a successful employee and recently went back to school to obtain a degree in Graphic Arts. I am a patient advocate and I am good at what I do. I have accomplished so many things despite and with chronic illness.

“I feel like a burden.” There are days when I can’t get out of bed or do simple things like cleaning the house or doing errands. I really feel useless when I need to go to the store for groceries and my husband goes in my place because I can’t walk to the front door and out to the bus stop to go to the store, let alone, carry anything back. Then half the time he ends up in the emergency room because he had another “episode” which makes me feel guilty and that I let him down I’m a bad wife”. I feel like my body is a failure, and is a limitation that prevents me from enjoying life to the fullest.

What went wrong — my getting sick — that wasn’t my fault and the bad things that happened before and after weren’t my fault, either. All the good things were due to my hard work. Nonetheless, if I could have protected my health, I would have done everything in my power to make sure I stayed healthy, but I couldn’t. Further, I had no control of the awful things that happened to me. That just goes back to life simply not always being fair. So, I didn’t mean to get sick — I really didn’t — that’s all.

Those are the bad days. On my better days, I push through easier; I enjoy life more; I laugh, smile and love more, because just like the bad days, the good days don’t last forever. Every day isn’t good, but I try to find the good in every day.

Being sick makes you a lot of things: some negative and some positive. Fear. Wisdom. Guilt. Strength. Empathy. Weakness. Learning to take the lows and the highs.

That’s just me, this story. This is my life with chronic illness. Tell me yours.

-Heart and Soul of Hope for All-

Kris Siegler