What It's Like Being Young And Diagnosed With A Chronic Illness

By Tatianna Jacobsen

Musings on cherishing youth in spite of chronic illness

I was diagnosed with Fibromyalgia, Myofascial Pain Syndrome, Gastritis, IBS, Depression, Anxiety, and ADHD, all by the age of twenty. I have read stories of people struggling for years with their pain, and I can imagine how horrible that feels. When I was in pain and wasn't aware of what was causing it, it was scary and frustrating, and I don't want to take that experience away from anybody. I want to specifically talk about when I was diagnosed and how it felt being told "you have an incurable, widely unrecognized and under-researched, chronic illness that you will have for life,” all starting at the age of 20.

I am so young, and to receive news that I had such a frustrating, painful and mysterious illness was devastating. I didn't know how to move forward; every time I had a flare, I questioned if I deserved to go to the emergency room because my pain was terrible. I felt that my illness was less, that the doctors would treat me like less, and that I'd be embarrassed and turned away, left to fend for myself, with a now broken heart from a failed system. How is it that just because my emergency won't kill me, it's not worth relieving?

This was a tough place to be in, especially for someone who hates confrontation and defending myself. I had to really learn to stick up for myself having this illness. I had to learn to tell doctors what I needed, to be honest and strong about my pain. To voice my opinion on treatment and whether or not I am "worthy" of being treated.

Another hard thing to face was the reality that if I didn't change my lifestyle, my health would not improve. I needed to meditate, exercise, cut red meats out of my diet, drink fiber packets, eat healthier, etc. I had to flip my life around, and luckily my husband (yes, I know. I married young) is so supportive and uplifting. Knowing this pressure of what I eat could hurt me, what I do could hurt me almost made me want to do it less. But, I was so frustrated that no doctor told me this; I had to do the research on my own.

My life changed in other ways as well. I could no longer go out without pain, eat without pain, sleep, walk, breathe, blink without pain. This new reality was so difficult physically, but mentally I've had to overcome a lot. It can be so hard to stay positive, driven, to not morn the life I could have had if I were healthy. I have to take my reality and see what I can do with it. I'm still in the experimenting phase. Sometimes I go too hard and end up in bed for a week, and sometimes I give up too easily, cave in too fast, and end up lying in bed, demotivated and depressed.

Knowing that my life is not what I thought it was going to be, was (still is) a hard thing to get over. But I try to educate myself, give myself the best possible base to start from, and keep going on. Sometimes I fail, sometimes I'm mad, sometimes I beat myself up for the thing I can't change; I am ill. I fight not to be ill. I go to doctors, get shots, take new meds, get new scans; it’s not the life every 20-year-old dreams of. But it's still a life, and it's my life that I feel I want to make worth living.

Tatianna jacobsen

Tatianna is a 20 year old girl working to live with Fibromyalgia, IBS, Gastritis, Myofascial Pain Syndrome, depression, ADHD and anxiety! What she loves most is interacting with other people in a way that feels creative, so that’s through graphics or writings on her Instagram, that’s on her blog, or singing (anywhere she gets the chance). With her platforms she loves to educate, relate and learn all that she can. She shares her stories very open and honestly, and loves to hear from others. She connects with the community, hopefully being a person that people feel they can talk to or just vent to.