Jess Lyons: Beyond My Personal Battle with Autoimmune Arthritis and More
This blog post is part of a series of storytelling pieces, “Beyond My Personal Battle”. The interview-based series is dedicated to sharing an inside view of individual lives working to grow and thrive beyond the diverse challenges of illness or disability. Interviews are conducted by Mary Brimmer.
What’s your name and where are you from?
My name is Jessica Lyons and I live in Buffalo, New York.
Do you have a diagnosis for your condition and what was your journey to it like?
I had some mysterious things happen when I was a teenager and in my second year of college had some major issues going on and I ended up interstitial cystitis, which is kind of like Crohn’s Disease but in your bladder. I then continued to have other issues that were mysterious. About five years ago I was diagnosed with autoimmune arthritis, very similar to RA. Then my issues started to compound because of stress.
Right now, the things I’m dealing with most are autoimmune arthritis, trigeminal neuralgia (when the veins running to your face kind of short-circuit), and some other ailments that are being lumped under fibromyalgia. It seems like one person shouldn’t have so many things going on with them, but the reality is that they’re all interconnected.
Do you have any techniques you use to deal with stress?
It wasn’t until I wasn’t quite in the pit of despair that I was able to even put together or see that I needed coping mechanisms. I think when you’re so sick and no one around you knows how to deal with it, you can’t see the light at the end of the tunnel. You can’t see a way to even get through the tunnel. Once I recognized that I was having some mental health issues I started using self-care. I started a night time beauty routine and I would set aside a half an hour each night and it was like a meditative thing. It was taking care of myself, which I hadn’t been doing for the past year and a half. I had been focused on taking care of my son who has special needs and I had completely let myself go.
As a woman and as a mother with a child who has special needs, there is this expectation that you would almost become a martyr for your child – that once you have kids you should live for your kid. Certainly, I was doing everything to be the best parent I could be but I was driving myself into the ground and that was compounding with my own health issues. I began to recognize that you can’t be a good parent if you’re not taking care of yourself.
Have you had the support of others in your battle?
I don’t live near my family so they have a hard time understanding that the Jessica of today is not the same as ten years ago [because] I look somewhat the same. I think it wasn’t until they saw me give myself an injection and we were talking about chemotherapy that they started to see that this is a real and serious. I would say I find most of my support from friends. I find women tend to be more understanding because most women go through some kind of health issue in their life where they’re dismissed by a doctor. Mostly I have built my support community with close friends who have encouraged me to advocate for myself.
Is there something you wish other people knew about your illness or a misconception you’d like to address?
I think that anybody who has a chronic illness, particularly an invisible chronic illness, is in the same position where you feel like no one believes you and you have to convince somebody that you’re sick. If you look at me, I look like a healthy thirty-something year old woman. You wouldn’t think that I get exhausted quickly or that the joints in my hands are dissolving as we speak. So trying to convince someone that you’re sick in a way they can’t see it is very challenging. Greater awareness is needed that someone with a disability can still be able to work, just on their own physical terms.
How do you evaluate when it’s right to share aspects of your condition with others?
I take a very matter-of-fact position on it. Sometimes I have to bring it up because I have issues that can be misinterpreted and have been before. For example, talking and smiling are unfortunately very painful for me so I have to explain to people that if I’m not smiling it’s not because I’m in a bad mood, it’s because it’s painful for me right now. Those are social cues that we’re accustomed to.
I used to run a lot with my mother who is very fit and runs all the time and people would tell me that I need to be faster because i was younger. I’d have to explain that yes, I’m younger, but this is why I’m not faster. I am proud that I’m able to do this because this is a challenge for me. I know that can be awkward for some people, but I personally am not going to dance around a situation or feel bad because someone is making assumptions about what I should or should not be able to do. If you’re going to make an assumption, I’m going to give you an honest answer.
How do you balance caring for your child and yourself?
My son’s still young, he’s two and a half years old and he’s non-verbal. He has a number of significant delays so I can’t really explain my condition to him at this point, but I guess my strategy is that I can’t be the parent that he needs unless I’m taking care of myself as much as possible. As of recently, I’ve been more vocal about not exceeding my limitations because I know where the line is and I know If I go over it, it will take me days to recover and that’s not great for our home life. There’s only so much time in the day and I have only begun to try to figure out how to balance all these things, including being a parent and working. I’m chronically ill but I don’t want that to be my whole life. I don’t have the answer yet but just can say that we need more balance in our lives and that people should be encouraged to have more of it.
The biggest thing is that I’ve stopped caring what other people think, which is really hard to do. Anyone can get online and voice an uneducated opinion or pass judgement. I am just at a point where I know what I need to do and I’m going to do it...and if someone says something to me, I’ll explain why what they’re suggesting isn’t possible for my particular situation.
What are some of your methods of advocating?
I speak out and bring attention to the fact that I have multiple chronic illnesses and sharing what it’s like. I think a lot of us hide it and now that everyone has their digital identity, I’ve taken to showing people. I share photos or stories of the site reactions I get from the injections I have to take or the positives of feeling better from the medication and my gratitude for it. I share more information online in a way to increase exposure. We don’t usually talk about our chronic illnesses openly or publicly. It’s become part of my identity and I can’t hide from it. It affects every part of my life now.
I think we’re at a point in time where we can be more open and our generation is a lot more understanding. There’s still much farther to go, but I think our generation will bring more change. For chronic illness, I have a lot of faith in science and I hope that we’re at a turning point and that there’s going to be some major breakthroughs so people don’t have to be in pain everyday.
Do you have any last recommendations for people when their battle seems insurmountable?
I think the best thing that you can do is find a support group where the focus is on problem-solving and not on the negative of the disease. It’s really difficult to not focus on the negatives and how you used to be able to do certain things or a whole range of things. I want to be happy with my life, so I’m not judging myself by what I used to be able to do. I may have changed my goals, but I still have goals and they’re realistic to what my abilities are.