What It's Really Like To Live With An Invisible Illness

UJT Fitzgerald, 23 

Rochester, New York

Invisible Illness:
Hodgkin lymphoma

When did you first learn of your illness?

I was diagnosed with stage 3 Hodgkin lymphoma in December 2016. I started feeling exhausted all the time, with strange headaches and swelling in my neck. Multiple doctors told me it was just a sinus infection. People would say I seemed fine until they felt the swelling, but I knew that it was something more.

Does the invisibility of your illness affect the way you’re treated? 

During treatment, things stop being invisible and become visible. Everyone has that image of a cancer patient without hair, thin and pale. Once treatment ends and your hair and eyebrows start coming back, everyone around you acts like everything is normal again, but you live with a deep anxiety and distrust of your body.

Every seemingly minor ache or pain is a reminder of what you’ve been through, a potential spot to find another lump, a trigger to send you spiraling toward a panic attack. Some days are easier than others, where everything seems like it did before I was sick.

Going through treatment strengthened my core personal relationships, but sometimes I feel like even those people don’t understand what it’s like now that the obvious illness is over. I get the sense that many people see the physical signs that I’m getting better but don’t understand that sometimes I’m still in pain, and I’m almost always still anxious.

What’s been the hardest or most challenging part? 

Besides going through treatment, the most challenging part has been learning to trust my body again. It’s so strange to feel this disconnect between your brain and your body, because your body betrayed you on a very fundamental level. Having cancer made me realize how little control I actually have over my body, and it’s hard to reconcile this new distrust on a day-to-day basis.

How have you managed to cope?
I made it through treatment with the support of my friends and family, and with music. I find now, after treatment, that playing music and releasing music by my friends gives me a tangible thing that I can feel in control of, an end result to work toward, in contrast to the open-ended question of whether or not the cancer will come back. I work every day on accepting and processing the trauma of what happened to me and the new reality I find myself in.

How do you practice self-care?
When I’m faced with serious panic or anxiety, I try to get through the immediate situation by using visualization and breathing techniques. I have anti-anxiety medication I can take if things get out of hand, but I try to practice enough self-care in general so that things don’t get that far. Seeing a therapist regularly has been a huge help for me.

What would you want people to know about having an invisible illness?
Just because someone seems okay on the outside doesn’t mean that they’re fine, and it doesn’t always help to tell someone that they’re strong for dealing with an issue they had no choice but to deal with. To everyone else living with problems that others can’t see: Your pain is real, what you deal with is real, and there are lots of other people who know what you’re going through even if you can’t see their illness, either.

5 People On What It's Really Like To Live With An Invisible Illness

http://www.huffingtonpost.com/entry/living-with-invisible-illness_us_59b03fcfe4b0dfaafcf4f41e