Living with Chronic Illness: Let's Share Our Stories

Hi to you all! I'm 27 so it's great (in a not great this sucks way) to see younger people here! I was officially diagnosed about 2 years ago but started getting sick right around the end of my undergrad studies. So I was about 21. Currently I'm on enbrel which works decently. I was off and on it for a bit due to insurance issues so currently I'm also on Prednisone (the worst) while I get back on weekly enbrel. I try to move my body where I can...I like to hike in warmer weather and rollerblade. I also have depression and anxiety and am getting an adhd diagnosis so moving my body and getting outside is also good for all that. Other things that help beyond meds and that bring me joy: hanging with my pets, reading, baking, making art, calling up friends I also use weed pretty often for pain management and mental health and sleep which helps a lot I'm pretty bad at getting in all my meals and eating well but I'm working on that one! Happy to meet you all :)

Hi Brenna! Although i am sad to hear you have AS like me, I am glad to know someone around my age to identify with. I was diagnosed at 21 and am 25 now. But i was having symptoms for as long as i can remember! Bad joints, and back hurting and stiffness, terrible sleep, scoliosis, sacroilititis, anxiety and depression. These were all indicators of the disease but we just didn’t know! I have had MANY doctors over the years trying to diagnose the symptoms that were of a much larger encompassing disease. At one point in high school i was leaving every few days early for doctors appointments and other students would question me. They said “you dont look sick. It doesnt look like anything is wrong with you”. That is some of the worst words you could hear from peers. I went to a neurologist, a sleep doctor (and was temporarily diagnosed with narcolepsy), i tried dozens of medications that filled a gallon sized plastic bag by the end of it all. Then i went to a psychiatrist finally and found out i had MDD and GAD at 16 years old. This was a big breakthrough for me. I would never have found out about my AS if my dad wasn’t already going to the rheumatologist himself (found he has osteoarthritis). I started on humira and at first it was great! But within 8 months I developed psoriasis on my head and started losing chunks of hair! I was distressed because i didnt know why it was happening. Soo after 4 biopsies on my head, they said its the medicine and switched me to Enbrel. That one hurt a lot and caused skin irritation and hives. And currently i am taking Simponi (the longest i have been on any biologic). It is my favorite. Rheumatologist has told me “motion is lotion” and i try to remember that when i dont feel like getting out of bed. Drink lots of water, take care of your mental health (still learning how) and pay attention to your body and when it says activity is too much for you. Would love to talk more!

I made typos sorry! I did the best I could!

Hi Brenna- It’s great to meet you. You are exactly my daughters age. I bring this up because she to has fibromyalgia. She found out at 15 years old. Her definition = Life-over. (But Really it’s not.) I was completely devastated for her, because I know exactly how someone feels finding out you have a life changing disease at 15 years old. She’s already had so many ups and down, and she’s so young. ( I got so tired of that sentence. But your so young. Eye roll.) it never means life ends, you just need to learn to adjust and find more creative the way for you to live life now. And if need be, It’s ok to be in slow mode. No need to hurry take your time. (take your time to smell the roses as they used to say) Though as her mom I find I’m way more understanding and empathetic about what she’s going through because I’ve walked that path myself. And I’m way more knowledgeable now then ever. So when someone says well what’s wrong with her/or me or You/she doesn’t look sick. (That one gets old too and another eye roll) but That’s when I get to explain our invisible Illness/disease and shed some much need light on Fibromyalgia and other Illnesses/diseases that go hand in hand. It’s actually shocking how many people never heard of it. Mind blowing I know, but I had to recall I grew up in a family of no health problems. So it sheds new light -people need an introduction to my illness/disease. And here I am to let them know all about it: Most become a little more understanding. I was adopted. My adoptive mother was a kind, loving, gentle and nurturing person. (I hit the jackpot on mom’s!) She never suffered any illnesses or took medications. And no one else in my adoptive family did either. She held my hand through everything even when no else did believed me. My mom went to doctors appointments as an advocate all the way into my 40’s. No one even knew what fibromyalgia was or even had a name for it when it all started did me I went many years undiagnosed. I’m definitely glad there has been sone medical advancements since then. I do have to say I found my purpose when I had kids. My life and focus changed. Every ounce of energy I had went to my children. Even when I was sick. I still thought if I have to lay in bed well we can read a book or watch a thunderstorm or just listen to the rain together. (The small things matter) You really get creative ideas of what you can still do even while sick in bed. The most unfortunate downside to being sick was my condition wasn’t getting any better and my children endured the trauma of seeing their mother being wheeled out several times in an ambulance not knowing if they would ever see me again. No matter how hard we tired to shelter this from them they just knew their kids and kids know when somethings wrong. (We told the truth, when they asked questions but did our best to answer in an age appropriate manner) That’s my most heartbreaking experience. So back to the motivation, at 27 I had my first child. I felt I would have way more patience for both a child and my illness, boy was I right and glad I waited because it’s hard, nobody tells you anything about a baby that never stops crying (colicky baby) or sleepless nights because of fibromyalgia and then you have to try and balance such a load. But it definitely helped me take the focus off myself and what I was going through constantly. So it was ok because I was busy to busy to think about being sick, if that makes sense. I took my kids to the park, practices, picked them up after school I tried to make life as normal as I possibly could. Looking back I ask myself how ? Where did I find the energy ? I don’t really know, you just find it within yourself. It’s a drive I had never had before. (Grateful for it, I still don’t know where ever it came from.) Before I could barely get out of bed everyday. But now I have a little person who solely depends on me - and that changes everything. Now I will not lie there were days I had to call in reinforcements to help. There’s no shame in asking for help ever! You do you and only what you can handle is what I tell my kids. I won’t judge you. That’s just a tiny bit of my story. I honestly think there are just points in life we get to, and sone depend on where we are in our Illnesses/diseases. I see it from time to time with my daughter and I’ll be like “Oh, I remember what that was like or “Oh I’m sorry you have to go through this part. But where ever you are in your journey through your illnesses/disease learn to be kind to yourself, Say nice things to yourself, and always listen to yourself when your tired or need a nap take one. This isn’t a easy journey by any means it’s definitely a character builder find some humor along the way too, it’s good for the soul. Best wishes, and hugs right back at you! Mischlene