In honor of CFS & Fibromyalgia Awareness Day tomorrow, I wanted to focus on how ME/CFS & Fibromyalgia are family diseases. I know that as a patient myself, I have often got in the mode of thinking how ME/CFS affects ME, how Fibromyalgia affects ME…but it’s not just me that the disease affects. These illnesses affect our entire families.
CFS & Fibromyalgia affect our spouses, children, grandchildren, stepchildren, parents, siblings, in-laws, nieces, nephews, aunts, uncles, friends, employers…everyone we have contact with regularly is affected somehow by our illness. I know for myself I often miss family birthday parties, holiday celebrations, family members sporting activities, and many, many more that I can’t even begin to count. I have missed out on a lot over the past 20 years but so has my family because my illness has had a direct affect on their lives.
After a while, people just stop asking how we are doing and just assume that we feel like crap and that we won’t make it to events. We can’t be depended on for helping most of the time so if we do offer, they know that it’s never a definite yes but a “maybe”. No one can depend on us anymore and we can’t even depend on ourselves.
The hardest part for me being sick is how it affects the children in my life. My son has to live on a daily basis with my illness and my step-grandchildren have been affected by it as well. I can’t really make any advance plans to do anything with any of them and if I do, I usually end up having flares on those days. So if I am able to attend, I’m not fully there because I am so miserable. It’s hard for adults to grasp these illnesses and then we have to try and explain to young children how sick we are. It’s a no-win situation for everyone involved.
So on May 12th, when we are busy trying to raise awareness, keep in mind all of those people in your lives who are also touched by CFS and/or Fibromyalgia. They all need to be recognized also.