Pretending to Be Normal is Exhausting

I’ve been really reluctant to write about my health issues. On the one hand, I’m afraid people will see what I write. On the other hand, I’m afraid they won’t. I feel really compelled to share some of what I’ve been going through because we’re all fighting demons or struggling silently in some way, and I want you to know you’re not alone. I take over 35 pills/supplements per day, adrenal support cream 3 times a day, plus all kinds of powders and potions. I don’t leave the house too much. Noise, light, and stimulation exhaust me. I feel 300% percent more sensitive to these things now, and it makes it hard to be outside, where the world is so loud and busy.

I do my best to be productive, to accomplish things, because that makes me feel good and useful in the world. So how can I feel good when I’m limited in doing the very thing that helps? Change my goals, I guess. Taking a shower is a big accomplishment, cooking something small is a big one, along with going to doctors and project managing all the different aspects of my illness. Since I can’t do many things for myself, I have to organize to have other people do them. I am ashamed about being sick. I feel guilty for being a burden on others. I feel guilty for not pitching in more, for not being the friend and daughter and partner I know I can be. I feel ashamed to be 32 and need someone much older than me to come and help me cook and tidy in the house. But I have to keep accepting where I’m at. I’ve been fighting it and it’s not working. Ma laasot?

I thought I had already accepted being sick, after I came to Israel in 2014, got a virus, and never really got better. I thought I had mourned, and I thought I had gotten over it last time I had a flare and then got better. It’s so frustrating and sad for me to watch life go on without me, not being able to participate in it in the way that I used to, in the way that I would like. Although people try their best, everyone is busy, and I’m often alone and isolated in my illness. People see me and think I look fine, which mostly I do…but that’s because I put on a good face. I don’t go out when I don’t feel good and it helps me feel more normal to wear makeup when I’m out. Because who wants to see someone suffering? It makes them uncomfortable. What people don’t know and what they don’t see are all the clothes I don’t wear anymore because it hurts me to wear them, the jewelry I can no longer put on because of sensitivities and pain, the enormous effort I put forth to get dressed, go out, and pretend to be normal. It’s exhausting. But what are my other choices? Stay inside and be sad because of what I’m missing?

I like to think of myself as someone who is optimistic…I bounce back from adversity, I always find creative solutions to problems, I focus on the good in my life, the things I can be grateful for. But something I realized is that I can’t positively think my way out of this one. I won’t be fixed by taking some new drug or going to bed earlier or any of the variety of things people suggest (with the best intentions, but honestly? I have my path. Let me go on it). I follow a really strict diet, I take a ton of supplements, I rest, and I see doctors. I try to keep my mood up by seeing friends (and I have lovely ones who come to me or near me, so I don’t need to go far), I reach out for help when I need it, and I try to get fresh air and a small walk in every day. It’s not like I’m not trying. In fact, I’m trying so hard everyday-to get well, to be normal, to keep my mood up, to invest in my relationships, to do things that will be good for me or make me feel good-that that in itself can be tiring. And I don’t know what to do about it.

I’m in a grieving process. I’ve lost myself and I don’t know when or if I’ll find myself again. I have hope I will be better, but I think I’ll always have to be careful with myself. I hope my pain and suffering are not in vain. I hope my experiences can help others. I hope people resonate with the fact that we all struggle, and find comfort in that.

I’m one of the lucky ones with chronic illness, someone with supportive family, friends, and my lovely partner, who sees most on a day-to-day basis how hard it is to live with someone who is chronically ill, and takes on so much. I had a job, which allowed me to save. I won’t end up on the street. I have a cute little dog who keeps me company while I’m inside all day. But not everyone with chronic illness is so lucky. I hope I can be a small voice for those with the same struggle in this very loud world.

May we all count our blessings, be grateful for what we do have in our lives, support and be supported by loving people and have the best of health.