10 things about chronic illness I wish I had known in the beginning
1. Doctors don’t know everything, in fact they know very little but think they know a lot.
If I had to relive my diagnosis journey all over I wouldn’t let myself feel one minute of doubt. I had multiple doctors tell me I was crazy, and even though I knew I wasn’t and that what I was experiencing wasn’t normal, I started to doubt myself. Now I know that I just ran into a particular bunch of idiots who have no skills beyond what they see on a blood test, and now I would not let them get to me. I know my body better than anyone else does.
2. Learn to take care of yourself first, and learn to say no.
I have a hard time saying no, it makes me feel bad because I have a genuine desire to help people. When my health first started to fall apart and people didn’t know about it I would be asked to do things that I didn’t feel I could do. I would do them anyway because I felt guilty saying no and because I didn’t want to admit something was wrong with me. If I had to do it all again, I would take better care of myself. I’m still working on this one, but I’m getting better at it, even though I still feel guilt (I just try to ignore it). One of the hardest things I have done (and this sounds stupid now) is say no to volunteering to teach a class of small children. I love little kids, but I can barely physically function well enough to take care of my three year old and I knew it would cause me severe physical pain to take care of other people’s small children on a regular basis. I’m still glad I said no, even though it led to me be treated in ways I didn’t appreciate and I still feel guilty about it (guilt is such an inconvenient emotion). I’m still looking for a way to get rid of the guilt.
3. Life can still bring you joy, even if your body is miserable.
I never imagined I could have a joyful life while living in such pain. Yes, my body is miserable all the time, but I still live a full, good life. I may not be happy all the time, the suffering of my body will sometimes take over and prevent me from being happy, but it does not prevent me from living a joyful life.
4. A lot of other people are suffering too, just in different ways.
When I first became ill I had a hard time seeing other people’s problems. Their problems all seemed insignificant to me, at least compared to mine. So what if you have a difficult child or spouse, or you don’t have enough money etc. my life was over! It took a lot of time for me to realize that while most people are not in constant physical pain, many have to deal with emotional pain. Just because my problems are so big does not invalidate someone else’s, and because I have suffered a lot, I can be a sympathetic ear for anyone who needs it.
5. There is nothing wrong with taking pain medication
As I shared here I went a long time refusing pain medication because I thought it was a weakness. “I am a strong person and am not being strong if I give in and treat my pain with pharmaceuticals. If I just tried x,y,z then I would be fine, only weak people take drugs. ” Well, it took a few years for me to learn, but I eventually figured out that yoga can only do so much for you and there is nothing wrong with using pain medication prescribed by a doctor.
6. Ask for help and don’t be ashamed of it.
I’ve always been stubbornly independent. I am a typical middle child who learned early on that the easiest way to get along in my family was to take care of myself. That attitude has gotten me through life for the most part and I’ve been proud of my strength and independence. Too bad my body had other plans. When your health has been destroyed your independence is gone, you no longer have the option of stubborn pride. I kept on refusing help for a long time, until everything collapsed around me and I no longer had other options. I should have asked for help sooner.
7. People are going to judge you and blame you and treat you in ways you never expected, get those people out of your life.
It is very hard for a healthy person to understand chronic illness, I know I didn’t when I was healthy. No matter who you are there are people who are not going to believe you. They are going to think you should just “get over it.” They are going to judge you and they will treat you badly. I learned that I should spend a little time trying to share what I was going through, but if that person isn’t interested, then they are out of my life. I have enough difficult things going on, I don’t need to be surrounded by people who are negative influences. Don’t try holding onto a relationship that is toxic, you only have so much energy for dealing with other people’s crap. There are a lot of wonderful people who will care about you and want to help you, surround yourself with these people. I’ve been amazed by the number of people who care about me and I treasure these people.
8. Throw out useless advice
Having health problems brings people out of the woodwork. Most people are really well meaning and I appreciate them caring enough to offer advice. I don’t listen to it very often, however. If I tried everything that people suggested I try I would be broke. I’m not an ATM and usually people’s advice involves spending large amounts of money on controversial “treatments.” I’d also throw out advice of some “experts.” For example, the experts go on and on about fibromyalgia and exercise. Yeah, that’s great and all, but if I kill myself on the treadmill I won’t be able to walk for a week and I definitely won’t be able to take care of my kids. So I throw their advice out the window and instead my “exercise” is playing with my kids. Their advice does not apply to my situation, so I ignore it.
9. It’s okay to be depressed
I’ve been told a million times that I was just depressed (as I shared here) and that there was nothing wrong with me. It made me furious that the doctors would not see beyond depression and that’s all they wanted to treat. I felt humiliated because they thought I was depressed (I wasn’t at the time, just pissed off). I realize now that I overreacted, no I wasn’t depressed, but if I was there was nothing wrong with that. Many people suffer from depression, and it’s only natural that someone who is ill would be depressed. I’d be more worried about someone with chronic illness who was never depressed! I consider myself a happy person, but there are periods of time where I get depressed. I get frustrated with what I can’t do, I get angry for people not understanding, and I get tired of people treated me badly, and naturally, I get depressed. I eventually am able to shake it off pretty well, so I’ve never felt the need to take antidepressants, but if I did, I would see nothing wrong with that. As I shared in this post, there is no shame in needing help, chronic illness is tough, it can be very depressing, so it’s okay to ask for some help.
10. Your life is not over
When my body fell apart I thought my life was over. My life as I previously knew it was over, but there were plenty of ways to build a new life. I can’t do a lot of things I used to like to do, but I have discovered other things that I can do which involve using my body less. I’m not repelling off rock cliffs anymore, but I read and write and play the piano much more than I used to. There are ways to adapt and to change as my body does.