My closest friends are wonderfully understanding - I am blessed with such compassionate, kind friends. They know first-hand that I have to stop often when we take walks to wait for my heart rate to come down or that I often have to say no or even cancel plans at the last minute when I really want to go. And, of course, my husband understands because he lives with me. With increased stamina, I am even more likely than before to push too hard or do too much - he's usually the one warning me to listen to my body and slow down!
The rest of the world, though - acquaintances, friends that don't spend as much time with me, and certain extended family members - see someone who looks vibrant and energetic when they see me. They think that my restrictions are self-imposed, that I'm exaggerating my illness, sometimes even that I am looking for attention. Nothing could be further from the truth. I would give anything to live a free and active life again - to eat whatever I want, to have a glass of wine or a beer once in a while, to exercise intensely and do all the things I am longing to do.
Because I am a generally happy person, usually smiling and cheery, and can now be out and about more, most people have no idea that every single moment of every single day is a struggle, that I have to be constantly vigilant about what I am doing, eating, and how I am feeling. Some think (I know because they have said so) that I "focus too much on my illness." They just don't understand that to ignore my limits for even a brief period of time is to sentence myself to worsening symptoms and a crash. That constant mental monitoring is exhausting in itself! I would love to be free of it.
One family member is clearly resentful of all the times in the past we have had to cancel plans at the last minute. They don't understand that if we cancel something we have been looking forward to, it's not on a whim or because it's too much trouble - it means that at least one of us is literally unable to get up off the couch, that we are incapable of traveling.
It's even worse with our son. Now that he is in college, living in his own apartment with friends, and even has a part-time job (a new victory!), people look at him and think he is fine. They don't realize that those 3 classes he takes each semester use up every last bit of his energy, that he struggles every day to keep up with his friends. They may see him do active things because he yearns to be "normal," but they don't see the days afterward that he is crashed, lying on the couch staring blankly at the TV, unable to get up. They don't realize the anguish he feels in not being like everyone else, the worry over being able to keep up, the deep distress over not being understood by even his closest friends. Like me, he has a positive, happy disposition, so people assume he feels fine.
I don't mean to dwell on the negative. I am blessed in many ways and am very, very grateful for the gains I have made these last few years. Sometimes, though, it is frustrating and demoralizing to be constantly misunderstood. It is a paradox. If I cover up my struggles and act like everything is fine, then people underestimate my illness and its effects and perhaps even think I am exaggerating it. On the other hand, if I am too open and honest about my struggles and limitations, then people think I focus too much on illness or they pity me. It's a fine line to walk. I am just grateful that there are some people close to me who know what my life is really like.
What are your experiences with what people see versus the reality of your life?
15 comments:
Yes...pretty much the same as you've written. IRL, only my immediate family understands my limitations. Others seem to think I'm either exaggerating it or making it up. It gets very frustrating to say the least.
I agree that in some ways, the more you become involved in the 'real world', the harder being sick becomes. People do see you as well and get shocked and offended when you can't do 'normal' things. Even though I am very unwell and in the midst of a relapse now, last year when I was doing well it really reinforced just how sick I was. My 'doing well' - getting out of the house every day, cooking, being taken for drives to nearby towns - was really most people's 'sick and incapacitated'. The more I could do and the more I participated in the world, the more I realised how big the gap between me and the rest of society was.
As I have mentioned before, I couldn't win. If I posted things on facebook of me doing things some people would get upset. Then if I post about my illness they get upset. So, I stopped posting except for the pictures of my new grandson,lol. That seems to be a big hit! I have a few friends who are very understanding of my illness and I feel so fortunate to have them in my life. Some people I have chosen to distance myself from because it is healthier for me. I still can love them but I need to detach from them. I now chose very carefully who I let know about my life. I feel more at peace. The less people know, the less conflict.
Yes, Siobhan - interesting how it is easier in some ways to be housebound or bedridden - then people are more apt to understand you are sick. When people see me at the grocery store, they don't know I have to go home and take a nap afterward!
Ah, Joanne, you have brought up a whole other challenge - Facebook! Yes, I have struggled, too. Generally, I don't talk about my illness much on FB because I limit my friends to family and close, in-person friends - I usually post something on Awareness Day but otherwise just post about family, nature, books, etc. But my mother recently told me that some family members think I am exaggerating my illness because it looks like I can do so much on FB. You're right - you can't win! try to stay upbeat and positive and people think you're making it up. So frustrating! Same here with detaching from some people.
Wow. i just wrote something exactly like this - i can send it to you via FB. it's excruciating line to walk and so very lonely (between being seen and hiding it). Susan
i'm at this very dilemma too. i actually just stopped trying to interact with the outside world. it became too confusing for them and hurtful to me. but it's lonely like this - you can't win.
I have been struggling with mcs for the past 8 years. Recently I was in hospital without having a choice about. It worried me to begin with, but I was so crook I didn't argue my case. In the enshewing weeks I have found that I am desensitizing....it is quite amazing. I am subjected daily to chemicals, cleaners and the ever present hand saintizers. I find it just astinishing and gor once in a very long time am feeling very close to what might be to the rest of the world, normal....
One of the best things I learned to do after being diagnosed with fibromyalgia is to create an effective support system. I told my family members and close friends a quick summary of what's going on and what can happen during flares, etc. So far, it's been a great system! I had one of my friends read more about it and taught me some holistic methods of relief. That was the greatest feeling!!
Thanks for sharing your story! I found your post at #SmallVictoriesSundayLinkup !
That's great that you've gotten such great support from the people close to you! I have some wonderfully supportive friends but some of my family just don't get it.
Thanks for stopping by and taking the time to comment.
Beautifully written!!! I couldn't have said it any better! Thank you!
I echo Diane, (is that all i can write?? lol) Seriously well put and described. A writer I am not I guess. I'm so angry and frustrated lately because of being mis-understood. I need to stop trying to be understood and just keep my boundaries in tact so I can focus on my needs to get through each day.
ditto ditto ditto, i have my cousin who laughed off my diagnosis and won't even talk to me, and called me a 'weak person' - my only hopes for her are that one day she will have the same thing and have to deal with it (half cocked smile)
I just found your blog and love it - I too have CFS (diagnosed 1-/2 yrs ago) and my own immediate family (grown son and daughter) will go months without even asking how I am doing. It is either that the forget I am sick or are afraid if they bring up the subject when I am doing fairly well, that will remind me to be sick again LOL, OR they don't really deep down believe ANYTHING is wrong and that I am a hypochondriac. It is frustrating - if either of them were diagnosed with an illness, boy I would be all over the internet getting as much info as I could to understand everything I could about their illness and I doubt either of them have ever even googled CFS....maybe they don't want me to be sick so they act as though I am not??? Hurtful/frustrating
Hi, Robin -
Glad you found my blog - thanks for taking the time to leave a comment. Sorry to hear your family is less than supportive. My immediate family is great - my two sons both had ME/CFS, too (one still does; the other recovered), so they understand it first-hand. But my extended family just doesn't feel comfortable dealing with chronic illness so most of the time, they just pretend everything is OK - I've had to come to terms with that and realize it's not me, it's them. After 13 years, I don;t think they're going to change!
Welcome to the blog!
Sue
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