Coping with chronic illness

[Persimmon]

Being sick for a looooong time is hard. How has it affected you?

I'm not talking about the primary impact of our disease, namely the symptoms.
I'm not talking about the secondary impact either, namely the direct consequences of our symptoms (eg having to give up work/study; living within strict constrains; feeling lousy most/all of the time...)

I'm asking about the tertiary impacts of this disease, the consequences of having to deal with those primary and secondary impacts over a sustained period.

There's a big academic literature on the psychological impact of chronic illness, but I've never read anything that adequately addresses the issue.

Anyway, it'd to great to hear of others' thoughts and experiences.

 

[Persimmon]

In my own case, looking back I think I was amazingly resilient for the first decade of illness... But I've found the sickness experience more difficult in recent years. Here are the areas I struggle with:

1. My self-confident has taken a battering. So has my emotional resilient. Cumulative emotional wear and tear takes its toll!
I understand the psychologists' tactics to try to counter these impacts, but these haven't proved an adequate defence.
I'm reminded of the dogs in those famous conditioning experiments: give a dog electric shocks that cannot be avoided, and do so on a random and frequent basis, and you rapidly create a demoralised, emotionally damaged dog. ME/CFS comes with so many set-backs, and so often I just don't see them coming no matter how vigilant and careful I am.

2. I've recently come to feel that i don't have a peer group in the way that I used to.
These days, my old friends are all flat out with busy careers and young families etc. My circumstances are completely different, in a way none of those friends really comprehend.
I haven't had the same sorts of life experiences as other people in my age range. This leads to much social stuff being less natural: its often feels as if there's a gap to be bridged.

3. People get pigeonholed according to their roles. I'm sort of status-less: I don't have a spouse or kids, or an occupation etc; i don't have the alternate status associated with a serious illness.
If I had cancer, others would get it: society assigns an acceptable identity to "legitimate" illness.
Even an unglamorous occupation is something others can make sense of; an invisible disease is something they cannot.
This makes a big difference to how you get treated.

4. I've come to feel bitterly resentful about the way that our society responds to different illnesses.
I won't rant here. Suffice to say, it's frustrating that predominantly self-inflicted illnesses (eg lung cancer; HIV etc) generate empathy and are are well researched; while I've learnt through experience that it's better to lie about my circumstances rather than admit to having ME/CFS (except with those I know well), and while really important research findings in ME/CFS don't get followed up properly (eg the Dubbo study still hasn't been replicated, a decade later; the Rituximab research is now 8 yrs old, with a compelling double blind randomised control published in 2011, and yet no other researchers have started a proper Rituximab study yet...)
Resentment might be a reasonable and understandable reaction, but I know it's not constructive.

5. I find it unbelievably infuriating not being able to think clearly; not being able to trust my own judgement as I used to; not being able to organise myself... There's no coming to grips with this.

 

[SickOfSickness]

I completely agree with everything you said, because I live it too.

I don't know how long ago you got sick. I think I got better at dealing with them over time, but I'm not over them. For me anyway, I feel the biggest thing is having just one or two people who really believe you and try to understand. Then you can kind of ignore how the rest of the world is seeing you, and their feelings help balance your negative feelings toward yourself.

 

[Sparrow]

I sympathize greatly with what you're saying. Though I think for me some of the things I've noticed are positives, as strange as that might sound (although it's hard to say how much of a change in perspective is due to age vs illness). However, I've only been completely bed ridden for two years now, so things might change if that continued longer term. I'm lucky enough to be slowly improving on the whole for the last while, which makes things much, much easier to take. The journey down was much harder.

1) I have WAY fewer inhibitions than I used to. I remember a time at my lowest where my husband was literally dangling me from his arms trying to get me into a wheelchair at the hospital while a bunch of other people stared and stared and stared at me. It was awful, and I was totally humiliated. But I've gotten much more accepting of difficult situations like that than I used to be. I think once you're having strangers shower you, you're pretty much a pro at that. I suspect that if I ever recover enough to be back in the world, I will be much more authentically myself and be more willing to put myself out there.

2) I have a very solid understanding of what is really important and what really isn't. There I things that I dearly want to get back in my life, like seeing friends, and going out to dinner with my husband, and doing creative things, and having new experiences, and traveling, and learning new skills. I'm quite sure that if I ever do regain my energy, I won't be spending it working overtime anymore or doing things just to please other people or meet their expectations. I've got a much more solid grasp on my priorities now, and the importance of actually living a life that's in line with them.

3) I've been one of the extremely lucky ones who had a spouse before I hit bottom, and whose relationship has gotten stronger through this journey. I think any major crisis that hits a couple will either break people down or cement them even closer together. This one took a major toll early on, but the longer we deal with it, the stronger we've become, and we're closer now than we were before I became so severe. I recognize how very, very fortunate I am in that.

On the down sides...

4) I am missing out on a whole phase of life. Not only will I likely never have children of my own, but I'm also missing out on meeting my friends' children, and seeing them grow, or being involved in their lives in some way while they're young. And because of this, I'm also not growing with my friends who are going through that. They'll be in a whole other place by the time I can see them regularly again.

5) Some of the friends I though were closest have vanished. And that is really, really hard. And the others have grown progressively more distant since I'm almost never able to spend time with them and even then the most I can do is have a quick chat. I wonder sometimes if my personality is shifting because I spend so much time alone and only see the same one or two people these days (husband and care worker).

6) I sometimes feel like I'm losing control over my life, home, etc., which upsets me greatly. Slowly the people taking care of me are developing their own systems for doing things, their own places to put my stuff, their opinions on how to take care of it, etc. and my house is evolving into something I wouldn't recognize. I'm not even sure how to explain why this hits me so hard, but it does.

7) I feel constantly frustrated like I should be able to single-handedly come up with some brilliant idea for how to raise funds or awareness for this illness. I am desperate to make a difference somehow.

8) I may never fully trust doctors without doing my own research again, even for things unrelated to this. ...Though on the plus side, I will always now have a better understanding of my own health and take a more active and informed role in it. And I'm way, way better at listening to the cues my body is giving me and taking them seriously. I shudder at the symptoms I brushed off or tried to downplay to myself before I became so severe. They were important. I was a moron.

9) I'm a bit more nervous around people now, I think. But the people I knew before getting really ill just don't interact with me the same way anymore (they're stiff, or nervous, or awkward much of the time, and many friends just don't interact with me at all anymore), and people who didn't know me barely register me now. When I'm out in the wheelchair, they talk to my husband who's pushing it but their eyes slide right over me. It's difficult to still feel like an accepted member of society, and I think that's gradually having a negative impact on how confident I feel about social situations.

 

[Kati]

Persimmon, thank you so much for bringing this discussion forward.

I am dealing with a lot of the issue you mentioned and it's not easy.

On my best days, I wonder how I can deal best with my situation, which means, how can I be more satisfied with my life, despite the roadblock I am facing? (No need to mention my worst days, i am sure that most of you relate to them). More importantly, what can i do about it?

i have been sick for over 4 years now, and I know that deep down, tomorrow I will not get better. i can kick, scream and fight, that will not make it better (well I tried that ). What are the other options?
- learn to manage my disease the best I can
- do some advocacy and awareness work (this serves me 2ways: doing something good for our community and getting the feeling that I am acomplishing something)
- feed my soul.

I think that feeding our souls is the important part which can be hard to accomplish due to our limited energy, mobilityand financial situation. What does feeding your soul mean to you?

For me, it means being creative, doing art. It makes my heart sing. I am teaching myself to draw. When I am too sick to sit up and draw, I look up the internet for video tutorials and websites related to art. It's very therapeutic because I don't think about my medical situation day in, day out, which is so easy to do. We all want out of our situation but thinking about it 24/7 is not productive!

So, what can you do to make your heart sing?
How can you improve your sense of belonging to your family, community?
How can you remain connected with your passions?

I hope I make sense and that this can be helpful to someone. I do not claim to have the only answer but I think that feeding your soul, whatever it may mean to you, is a good thing.

I have not read the book, nor do I have any ties to her but Toni Bernhard's. "How to be sick" could also be a help to you. She is also on Facebook.

 

[SickOfSickness]

7) I feel constantly frustrated like I should be able to single-handedly come up with some brilliant idea for how to raise funds or awareness for this illness. I am desperate to make a difference somehow.

8) I may never fully trust doctors without doing my own research again, even for things unrelated to this. ...Though on the plus side, I will always now have a better understanding of my own health and take a more active and informed role in it. And I'm way, way better at listening to the cues my body is giving me and taking them seriously. I shudder at the symptoms I brushed off or tried to downplay to myself before I became so severe. They were important. I was a moron.

I love your post. Good idea to mention the positive changes too!

I think 8 is much more positive than negative. And I think most people ignore symptoms, it's not a natural thing to have to realize you're very ill. And for most of us at a relatively young age, way before anyone would expect.

And 7 makes me think of positive things. Frustration sucks but I am just so impressed by the ill people who still have that real desire to help others. (Cannot remember what else I was going to say here, so I will hit post.)

 

[taniaaust1]

6) I sometimes feel like I'm losing control over my life, home, etc., which upsets me greatly. Slowly the people taking care of me are developing their own systems for doing things, their own places to put my stuff, their opinions on how to take care of it, etc. and my house is evolving into something I wouldn't recognize. I'm not even sure how to explain why this hits me so hard, but it does.

Sparrow ..I suggest if you havent tried already to share with them exactly how you are feeling there with that as they may then give you your personal space again. A persons home is part of themselves and how they express themselves. No wonder you feel upset over it.

I get uncomfortable myself due to (in my case its my boyfriend) completely taking over me and my life at times due to the illness.

9) I'm a bit more nervous around people now, I think. But the people I knew before getting really ill just don't interact with me the same way anymore (they're stiff, or nervous, or awkward much of the time, and many friends just don't interact with me at all anymore), and people who didn't know me barely register me now. When I'm out in the wheelchair, they talk to my husband who's pushing it but their eyes slide right over me. It's difficult to still feel like an accepted member of society, and I think that's gradually having a negative impact on how confident I feel about social situations.

Ive lost much of my confidence dealing with social situations due to this illness preventing me from so long being able to interact with others like I used to do... as in keeping me mostly homebound due to the physical affects of it.

This illness has brought out my Aspergers more.. I already found interactions hard before this happened.. so things much worst now. Before this illness, I could observe then "act" and hide my Aspergers.. now I cant.

Ive lost my friends over this illness.....

I feel all the things Persimmon mentioned too. I couldnt have better explained the issues.

One thing this illness has done is really destroyed my truth and faith in people. One can only be treated badly due to the illness for so long before those things get shattered. Ive learnt that most people will unfairly judge others and that most people do not really care. This is now the general impression I have of humanity... people who only care about themselves and dont really want to look at others who have issues.

This illness has also taught me how bad it is to feel very alone (before ME/CFS I used to enjoy aloneness..but now I truely hate it.. I spend too much time alone). One feels alone when most in the world are rejecting you cause you are so sick.. one feels so so alone and like not a part of their world.

Hardly no one understands this illness. The lack of understanding others have, cuts one off from family, friends and everyone.

My confidence is shattered due to the illness too. If I recover.. I know its going to be a lot of work to regain my confidence. I dont even bother currently to try to build it up as it just gets shattered time and time again.. as my illness causes me to be quite "incapable" and constantly screwing up things. (im a perfectionist..so those screw ups hit me hard).

On the positive.. yes it has helped me see what is important in life and what isnt. Small things dont tend to worry me.

But over all..this illness has done great harm to my personality and how I think of the world.

 

[AbbyDear]

Some good and interesting observations. It is amazing the how we have come to appreciate the simple things in life. I can not think of the word, but it seems more meaningful. Another issue that comes to mind (other than finances, and what has already been discussed) is how introspective we may have become... our lives revolve around the illness, the pain, how to get well, what doctor to see, prepare for the next appointment, fill out more forms, how to clean the house, etc. etc.... i.e. around us, it is so consuming, and in effect self centered (no ill meaning implied or intended). Some need assistance. It is just so sad this state of existance, to the detriment of being involved and productive in family, friends, church, community, work. Helping others is good for the soul, but it takes all the courage, fortitude, and determination we can find just to take care of ourselves. Is one thing that has chnaged - to be interactive and helpful to others, and to be one others want to be with. I hope this does not offend anyone, but it is another issue (for me) that comes to mind. Of course, we wish we could participate in all sorts of activities (we use to).

 

[meandthecat]

7 yrs and counting. 3yrs getting worse and 4yrs reclaiming a life. I'm good at coping; have kept my job and marriage but feel like I lost myself along the way.

If the particular genius of our species is adaption then being a new me is where its at; but do I feel enriched, empowered by this new persona? It beats the hell out of sleeping 16 hours a day, crawling up the stairs and pain 24/7 but I feel hollow as if this disease has forced me to burn away anything not vital to the moment.

I lost my memory, only hanging on to procedural stuff and the really basic things. When it began to return it had been so long that the new me differed too much to just accept these snapshots of a past life. I found a way to merge these images and to process them through the lens of my new self. I am weaving a new persona, using memory as a resource, understanding my past in a new way.

This is coping if that means managing difficulty, but as I change, losing who and what I was there is less to manage and I wonder if I will be able to rebuild the richness of personality I once felt.

This is introspective but losing ones sense of self can do that to you and this disease hit me in a way no other has.

 

[Hope123]

Persimmon and others, you bring up a lot of good points. Coping with what you call the "tertiary" effects of CFS and what I call the "existentialist" part of it is an ongoing process. One thing I've found is that acknowledging some days you do better and others you don't is important and that it is OK to be in denial, angry, sad, etc. -- the whole Kubler-Ross cycle -- over and over again with no set linear path to "acceptance."

I suppose one way I've coped with being out of the mainstream compared to my peers is to learn about the lives of other people who are not "mainstream." In actuality, a lot of famous or well-known people past and present live lives outside that of "normal" for their period/ circumstances. For example, Helen Keller, Eleanor Roosevelt, Beryl Markam, Emily Dickinson, Margaret Sanger, Jane Austen, Jane Addams, etc. I've named women here with a US bias but there are also men and international figures (e.g. Nelson Mandela was in jail for 27 years) in this position -- just that these women spring to mind first. There are people who aren't sick whose lives for some reason or another just aren't in the mainstream.

Also, I've been reading about what it means to live a meaningful life, which is not necessarily the same thing as a happy life. There are both essays and research on this topic.