Helping Family Understand ME/CFS

A friend e-mailed me earlier this week about how she was both looking forward to and dreading a vacation with extended family.  She said her family just didn’t understand how disabled she was by CFS.  This got me thinking about my own early difficulties with my family, so I thought I’d share some of those experiences as well as some insights that I’ve gained after 10 years of illness.  I know now that many of those early problems were based in good intentions and misunderstandings.

Like my friend and most people with ME/CFS, I felt as though my family didn’t understand what I was going through in those early years.  In fact, throughout those early years – the first undiagnosed one and the ones that followed it – I mostly felt utterly abandoned by my extended family.  Not only did they not understand how disabled I was, but it also seemed like they were intent on ignoring my illness all together!  I was stunned – and hurt – when we got together with my family, and everyone acted like everything was just fine.  Couldn’t they see how sick I was and how dramatically my life had changed?  Did they not believe me?  And when we weren’t together (none of my family lives nearby), it seemed that they had completely forgotten about me – no phone calls, no letter or cards, not even an e-mail to ask how I was doing.  I was deeply, deeply hurt.

I hit bottom, both emotionally and physically, during a family vacation in the Adirondacks.  My husband, Ken, and I knew it was going to be too much for me, but we let ourselves get talked into it. The trip turned out even worse than we’d anticipated.  The exertion and stress sent me into the worst crash I’d ever experienced (before or since), I had to spend most of my week closed up in my bedroom, and my family seemed (to me) to just ignore my suffering and pretend everything was OK.

That was the final straw for me.  I couldn’t believe that my family could be so cold and uncaring.  We’d always had a close, loving family, and I was stunned that they weren’t there for me when I needed them most.  How could they just abandon me like that?

Later, in hindsight and after much thought, I realized that I misinterpreted their actions.  It wasn’t that they had stopped loving me; in fact, it was just the opposite.  The all loved me so much that they just could not accept that I could possibly be that sick.  They were all in deep denial about my illness, trying to convince themselves that my illness was not serious and that nothing had changed.  In addition, they misinterpreted the way I acted when severely ill as depression and believed that what was best for me was to help me “get my mind off” my illness by not focusing on it.  Once I understood this, I could begin to forgive them, though it was a slow, gradual process.

Today, things are much better between me and my family.  Most of them now do understand that I have CFS, that it is a serious illness, and that it is not going away.  Though some of them still feel a bit uncomfortable with the fact that I am chronically ill, they do their best to be kind and supportive to me.  For my part, I try to be honest about my illness and its effects without focusing too much on it.  They now understand I need to nap every day, they can tell when I’m not feeling well, and they will even ask how I am doing occasionally.

So, how did we get to this new and improved state?  Well, again, it was a very slow, gradual process.  I think what helped the most was finally turning my mother around because she has a lot of influence with the rest of the family.  Because I didn’t seem to be getting through to her by talking, I wrote her a six-page letter.  In it, I explained what my life with CFS is like, how I perceived the way my family treated me, and how their actions really affected me.  I tried to emphasize that I understood they thought they were acting in my best interests.  I said that I thought they believed these things:

·      “the best thing for me is to keep my mind off my illness

·      I am consumed with thoughts of illness and focus too much on it

·      talking to me about my illness, how I’m feeling, etc. will only make me focus on it more

·      I am depressed a lot because of my illness”

And then, I explained:

“From my perspective, when I’m with you & the rest of the family, I feel as though you won’t acknowledge what I’m going through.  I feel as though everyone is pretending that everything is just fine.  What you describe as “walking on eggshells,” I experience as a form of denial, that no one will just look me in the eye and acknowledge that I feel very sick.  The worse I feel, the more I feel ignored and invisible.

I want to emphasize that I’m not looking for pity or coddling.  I don’t expect my illness to ruin everyone else’s good time or force everyone to express sadness.  All I want – and need – is simple honesty and acknowledgement.”

I also explained why it was so difficult for me to spend time with other people:  “Stress and exertion come in all sorts of forms: physical, emotional, mental, social.  Even “good stress,” like excitement and joy, release certain stress hormones that my body can’t handle the way a healthy person can.  Any kind of social interaction is exhausting for me.  When I’ve tried to explain to you how much it wears me out to spend time with the family, you tend to take it personally.  But it’s not personal at all.  I respond the same way to social interaction with friends.”

I realized that my mother thought I was depressed and that she had to cheer me up.  I think this may be true for many of our family members.  They see us feeling so sick, and they misinterpret our distress for depression or even anger or a bad attitude.  

Finally, I enclosed a copy of a chapter from a book on CFS that I thought did a good job of explaining what life with CFS is really like.

To my mother’s credit, that letter sparked a major change, which then carried over to the rest of the family (I knew it was she telling the rest of the family not to focus on my illness and to “help me” get my mind off it).  My mother actually sought out a therapist who specialized in helping families of chronically ill people.  I think she finally read some of the information I’d been sending over the years about CFS.  And she changed her attitude and the way she treated me dramatically.  Eventually, that led to changes in the way the rest of the family treated me also.

I think it’s important to be honest with our families about how ME/CFS affects us, especially how we respond to social interaction.  I have also tried to share information with family (and friends) about what CFS is and what its symptoms are.  As in my case, helping our families to understand what we truly need can be a lengthy and painful process, but I do believe it is worthwhile in the end.  I feel as if I lost my family for a while there, but I have them back now.

What have your experiences been with your family?