I’m going to be honest, I’m not one to openly share about my life. Especially things I struggle with. Last week when I shared my first blog post on social media was the first time most of the people in my life heard that I had ANY health problems. Yes, most of my chronic illnesses are invisible (to everyone but my mom who seems to be able to psychically know when I’m in pain by just the sound of my voice). But I was also hiding them. It was a conscious choice to keep these hidden and to myself. Why you ask? Here are a couple of reasons:
First: I’m stubborn. Yup. I’m admitting it. I foresee this being held against me in the future, but there it is. This stubbornness shows its ugly head in a lot of ways, but one of the most predominant is that I hate relying on anyone. Down to the core of my being, the hardest thing for me to do is to ask for help.
Second: I’m an introvert. This one may seem strange, but over the years as the chronic illnesses have piled up I have withdrawn more and more from people. The time to myself helps me take care of myself both physically, mentally, and emotionally. Since I don’t really interact with a lot of people, it was super easy to keep it to myself.
Third: I have experienced and heard additional horror stories of how telling the wrong person in the wrong way, or even the right person in the right way, can result in a relationship forever altered. I like my friends. I want to keep my friends. And I don’t want those relationships to change. My life has changed enough and I have already lost enough that I don’t want to lose them as well.
There are more reasons, but these are the ones that resonate the most for me.
If you have kept your chronic illness to yourself you can probably relate. The truth is, even if we keep it to ourselves, we still need ways to cope.
Here’s what has worked for me:
- I told only my immediate family (blood family and best friends) first. The people who have been with me through everything. This includes one friend who I’ve known since kindergarten, and once since my freshman year of high school. So I really mean EVERYTHING. They’ve already seen my ugly high school days and stayed around, I knew I could trust them. I told these people because they’re the ones I interact with most, and I needed them to understand I was vulnerable. I’m someone who needs to know and understand how I feel about something before I can talk about it. They gave me time and space. I’m very lucky to have such a supportive group of people in my life and people who also suffer from chronic illnesses who understand the struggle. I hope anyone else going through this does as well.
- I sought out strangers who went through the same thing. Okay, this sounds odd. It’s not like I stood on a street corner with a sign that said “honk if you have a chronic illness”. Though that would have been hilarious. I found a local chronic pain support group. I live in a small city, so there wasn’t one specific to psoriatic arthritis. The one I found meets once a month at a local therapist’s office. I was really nervous at first. As an introvert walking into a room with a group of strangers is pretty high up on the anxiety scale. But I went. And it was wonderful! I look forward to it every month.
- I got online and found further support. Since the in-person support group was only once a month I felt like that wasn’t enough. I looked for further support online. CreakyJoints and Tumblr have provided me with an endless amount of people to talk to about adjusting to and coping with the realities of chronic illness. Some of these strangers have become friends. Bonus.
- And finally, I shared. I found it amazingly liberating to share openly that I live with a chronic illness. After posting my first blog post, I was overwhelmed with support. People I hadn’t talked with in years contacted me to say they were touched by me sharing. Strangers were telling me how much they related. It was an amazing sense of freedom! But only because I was ready.
Now, if you’re not someone with a chronic illness…
but know someone with a chronic illness be gentle with us. Here are some things to keep in mind:
- We don’t keep it from you to hurt you, most of us normally do it to protect ourselves.
- When we cancel plans with you because we’re not feeling well or just outright in too much pain to be nice, try not to be upset with us. We would rather be hanging out with you. Trust me.
- When we do tell people what is going on, we often get unsolicited advice. Don’t get me wrong, it’s not all bad advice. Some of it is helpful. But be careful how you approach us with it. Maybe start by asking if we’ve tried it already, or have heard about it already. I’ve heard so many stories about people being told yoga will cure their chronic illness. I love yoga. I do yoga regularly. But yoga didn’t keep my arthritis away.
- If you’re frustrated about how our illness is affecting you or our relationship with you just IMAGINE how frustrated we are!
- If it appears our priorities and concerns have changed: You are absolutely correct. Chronic illnesses don’t have a cure, and medical sciences may have made tons of progress in these areas but there is still SO much it doesn’t know and can’t explain. The vast majority of treatments do not focus on the cause but only the symptoms. The best we can hope for is finding a way to minimize pain and damage. It’s terrifying! I’m almost 33 and while I had always had a long term plan (ya know… saving for a home, saving for retirement, etc) but this was never my immediate concern because I thought I had time. Now I’m terrified I won’t. I worry about things like short and long term disability insurance, life insurance, will I even be able to work until retirement, etc. Every decision is more complicated.
- If you think we’re becoming a hypochondriac–we might be. But there is a good reason. Having a single chronic illness is rare. People with chronic illnesses, including the different types of arthritis and autoimmune diseases, are at a higher risk for other chronic illnesses.
Remember these are just a few. Be patient with us. We’re trying.