26 Years

January 28, 1995 I was born. I was born a healthy and normal child. I was born with a cleft lip and palate but other than that I didn’t have hardly any health issues. I had a good childhood filled with so many good memories which I’m so grateful for.

Doctors have told me when you start to look back you can begin to tell when you started to get sick. It started in middle school in 7th or 8th grade. I got migraines and weird rashes at times. As I got older I kept feeling worse at times but never thought anything of it.

In high school when I was a sophomore in 2010-2011 is when I really noticed a decline looking back. I was tired all the time. I got diagnosed with Hashimoto’s Hypothyroidism which explained the fatigue and some other things. Then I just was tired and had migraines on and off and would get sick but it wasn’t like the flu. I got tested for mono numerous times throughout high school. Then my senior year hit in 2012-2013. I got an ovarian cyst and had to get it surgically removed. I didn’t recover that fast and it was slow and painful. I had to miss my senior year of golf and all the fun senior activities in the fall like all the football games and homecoming etc. and on top of that I had to withdraw from the first trimester I went to school for a whole 3 days before this all happened. I made it to one football game.

After that surgery I never bounced back. My energy never quite returned. I was so tired all the time and kept thinking I was getting the flu or fighting something off. I would go a few weeks feeling ok and then the sore throat, migraines, and body aches hit. It’s really hard for me to go back and look at how sick I was then but I had no idea. As a typical teenager I blamed everything on not being enough. Even though I was working out a lot and fairly active and healthy it didn’t matter.

I remember after any dance my thighs would burn and hurt so bad days after the dance and I would feel miserable and would be exhausted and have a pounding headache. I never thought anything was wrong. I thought I was still out of shape or I wasn’t running enough. Looking back not only was this not good for me, mentally I was just like a hamster on a wheel never stopping.

I golfed all through middle school and up until my senior year in high school when I had to medically withdraw. As the years went on playing, 18 holes was exhausting and after a school day 9 holes were getting to me. I didn’t handle the heat well at all. It never ran through my mind that this was something chronic. I didn’t talk about it a whole lot because I just kept blaming myself for feeling this way.

Then I went to college in the fall of 2013 – it started out great. I was commuting there so driving about 30 min there and 30 min back. About halfway through the semester I started getting really tired again. I would wake up with these awful migraines. I would get ready and start to head out to the car and would throw up. I would be sick for about 3 days and then I would be ok. I just figured it was “flu season”. My family and professors were all really supportive. I communicated a lot with my professors when I was out sick.

I was thinking about withdrawing and then my Dad died unexpectedly and I found him. (If you didn’t know – he passed away from a very rare cardiomyopathy ARVC) I couldn’t mentally go back and I didn’t want to. I wasn’t enjoying it and I didn’t know it then but I was depressed in college. Now I know why I was getting sick so often in college.

I was working hard, I had a few late night classes and early classes. I was driving a lot and having to read a lot. I had to walk A LOT on campus. My body was wearing down and I had no idea. I kept going. I thought everyone experienced this so like I said I really didn’t talk about it at all.

I wish I could go back and hug myself. I know I couldn’t have changed any future events and I would still have gotten sick.

Last week in counseling I talked about how I’m ready to talk about my chronic illness more and process that. I started by processing high school and what followed after that. My birthday was on Thursday the 28 and at least for me, now that I have chronic illnesses that are debilitating, birthdays are seriously hard. I’m not talking about the “I hate getting older”. It’s a huge sign that you’re getting older and your life is nothing like you thought and here goes another year that you’re sick. I go through a process of grief. I’ve been sick for almost 5 years now. I know I have things to be thankful for and I am but it’s also ok to grieve and sit in sadness sometimes. I’m learning to push into my feelings like I’ve learned in counseling.

The past two weeks I’ve done a lot of reflecting. This year has been different for me because I did so much healing last year in counseling that I’m able to process and feel things that I’ve buried because I wasn’t mentally ready to deal with it or process what feeling it was.

As I’m typing this I keep wiping tears because it’s hard. It’s hard to look back on your life and see how sick you were and I had no idea, no inkling ever. I was the kid who had a ton of energy and who had ADHD. I was the kid who was constantly moving and laughing. I was happy.

Somewhere along the way in high school I realize now that I got lost. I was depressed and didn’t know it and I didn’t talk about it. I was in physical pain so much of the time and felt like crap but I didn’t talk about it because I didn’t think it was a big deal. I focused on the social aspects of high school and had a lot of fun going to games and eating out etc. I see now how much negative talk I gave myself over and over.

I thought everyone felt like I did and was often in a bit of pain because we never stopped to rest and we just kept going. I told myself I just wasn’t healthy enough. I told myself I was being dramatic. I told myself to ignore it. I told myself it wasn’t important. I told myself I was happy. School was hard but I told myself it was ok I just wasn’t studying enough or I told myself how it was another example of how I didn’t know anything. Whew this hurts typing this out and getting this out in words.

It’s really easy now to look back and say how did I not know I was getting sick? I could get really down but instead it motivates me to keep raising awareness. Honestly the only things I was really ever aware of that were chronic illnesses was Type 1 Diabetes and Hashimotos and Rheumatoid Arthritis all because family members had those.

I look and see how much in the last 5 years I’ve learned about chronic illnesses and I’ve seen the world start to try and understand them better. I’ve learned more medical terms than I care to admit and have seen specialists I didn’t even know existed.

I also can’t get upset for not “catching” it earlier. Why? It wouldn’t have changed anything. After my Dad died as one of my doctors said my body was done. That was the big trigger. Then I got h pylori and then the final trigger was when I got cellulitis. My body had enough and had reached it limit and everything went crazy.

There aren’t cures out there so even if I would’ve known back then it really wouldn’t have changed anything. I also just look at how much has changed since I turned 21.

After I had turned 21 I had about 3 months of “fun” and then I got sick. At 22 I thought I couldn’t go downhill anymore then I turned 23 and thought surely I can’t get sicker. Then I turned 24 and saw this was likely my life now. I turned 25 and was really depressed. 25 was hard I was halfway to 30 and my life was nothing like I thought it would be.

I know some people always are hoping for a miracle and to be healed. That’s great if it helps you. This doesn’t help me anymore. Hope is hard. It’s hard when you get hopeful and get knocked down 5 pegs after a doctor appointment. It’s hard when you think you’re about to turn a corner and you get a flare-up that knocks you out. Of course I wish for a miracle and I know it *could* happen but I can’t focus on that because it’s not healthy for me mentally. I know someday I will be rid of pain from my earthly body but right now on earth I have pain physical and mental pain.

Now I turned 26 and it’s hard. It’s hard to look at pictures from 21-25 and I look at pictures during those times and thought I looked sick then. I compare it to now and I looked so much better a few years ago. My eyes weren’t as tired. My skin wasn’t so damaged from photosensitivity. I wasn’t as pale. My hair was shiny and long. My eyes had a sparkle.

I’m trying each year to deal with my birthday in a healthier way and process it but it’s hard. If you’re struggling with chronic illnesses too and birthday’s are hard I wish I had a magic fix for you but I don’t. It’s one of those things we just have to process and grieve.