May 12th was Fibromyalgia Awareness Day. I've been living with a chronic disease/syndrome since pre-adolescence. It might have been the strain of a move to a new state, a new school, where I was isolated and had no friends. I remember feeling something like depression for the first time in that small, sparse apartment, at the tender age of 9. My siblings had each other but I had no one.
Suddenly, I was tired all the time, and no amount of sleep could alleviate that. My joints, especially my ankles, were stiff upon waking, and my parents teased me for walking funny first thing in the morning. I gained weight, and well, you know how middle-schoolers are. I remember us moving into our new home the summer I had just turned fifteen and retreating to what would be my new room, sinking down exhausted on the carpet in the warm sun and falling asleep. I knew I risked the wrath of my parents for "skipping out on the work" and "being lazy" but the mere thought of helping to lift all those boxes and pieces of furniture made me physically and mentally weary.
After a battery of tests this past fall, the possibilities are pointing more and more in that direction. While I don't yet have an official diagnosis, I know what it's like for someone with fibromyalgia: to feel tired and unwell all the time, for no reason at all, for good days to be few and far between, to be called lazy, or accused of being a hypochondriac, to feel uncomfortable to the point of screaming.
These are things I would have liked people to have known about me growing up, and suggestions for being a source of strength, rather than a hurt, to a suffering friend.
The Care and Keeping of Your Fibromyalgia Friend
1 // Your friend isn't stupid or irresponsible. She suffers from brain fog. Be patient with her, try to remember the dates you have planned together and be the one responsible for remembering. This will take a strain off of her and keep her from feeling like she can't do anything right.
2 // Be patient with his level of activity. Especially if he's undiagnosed. He's not being lazy or giving in too easily. He really can't reach deep within him and summon the energy from some mysterious source just by willing it, the way you can.
3 // Don't judge her for choosing the path of least resistance. If she decides to work from home or part-time, if she is able, that is her call. She's the one inside her body and knows what's best for her.
4 // If you want to be a Florence Nightingale, some frozen meals, like the ones you deliver to other sick people or new moms, would be so appreciated! When he's in the midst of an attack, the healthy feeding of himself and his family is almost too exhausting to bother with.
5 // Overlook that her house is a mess, please. Hurtful comments won't improve her home, her health, or her mood.
6 // If he says no, he means no. Please respect his decision, and don't pressure him to go out with you. It's not a rejection of you but a carefully weighed decision based on a his abilities and his levels of pain. He has to dole out what he is able to do each day the way other people dole out sugar for their coffee.
7 // Educate yourself. Ask questions. Taking an interest in your friend's disease means a lot to her, and lets her know that you believe she has a legitimate illness. Having someone who understands what she's going through can make her feel less lonely, too. Especially if you are a family member learning how to live with a loved one's disease.
8 // Your friend is not a scrounger, a hypochondriac, or an attention whore. He would drop his illness to live a normal life in an instant. It takes an act of will for him not to feel sorry for himself or waste time wishing things were differently. But he has had to come to accept his life for what it is, and only with acceptance can come peace and fulfillment.
For further reading:
"A portrait of my child, once a week, every week, in 2014."
Afon: Cymru am byth! Wearing his Welsh football uniform during morning play.
I can't believe it's only been two months since we packed our bags and made our way to join Daddy in Wales. It's good to be complete again.
In case you've missed it dear readers, this blog is moving here. I was going to change the name in order to steer away from the mommy blog toward creativity and vocation, but I don't think I will now. I was getting a bit stressed over-thinking the changes and decided that simplicity is most important for me right now. It's also why I've decided to stick with Blogger rather than moving to Wordpress or Typepad or another blogging platform. Baby steps toward change make for smoother transition.