Chronic Illness Chronicles

The blog post I’m about to write was not what I originally intended to post this week, which is why it is going up later than usual. This week I want to use my blog to vent and get out how I have been feeling recently. 

I do want this blog to mostly be positive and not pitiful, but that’s just the reality of chronic illness, everything is absolutely not always positive and there are many struggles that come along aside from our symptoms.

Recently what I have been struggling with does have to do with some of my symptoms but it also has to do with other implications of being chronically ill.. the lovely comparison devil. Now I do want to give a trigger warning before I get into it any further. Please if you are not in a space to read about GI issues, anything to do with weight gain/loss, or body image please do not read this post, take care of yourself!!

The symptoms that I have been impacted by most are my GI symptoms, they have been my longest and most severe symptoms for as long as I can remember. As I mentioned in the My Diagnosis Journey post, I have had GI issues since I was a little kid. As I got older they got more intense. I would say my stomach complications reached a peak in 2017, and really have not become less intense since then. Different, but not less intense. I’m not going to get too into detail about my GI symptoms or what I mean by more/less intense here, if you are interested in reading more about what I specifically struggle with check out my previous posts!

Now let’s get into it. Lately my gastroparesis has been really bad. I have not been able to keep food in or receive nutrients from my food, which is really bad. I called my GI and they don’t have an appointment until August… So I have been doing my best to self manage and try to get all the nutrients I can.. but not much is working. Not only have I been struggling with my physical symptoms, but I have been struggling with it mentally as well for many reasons. The first reason being, that when your body is not properly functioning that’s scary. So just the “normal” anxiety of being ill gets to me. I worry how it will impact the rest of my health and if it will ever get better. 

Just to make it clear, receiving a diagnosis is absolutely validating and a huge step but that doesn’t take away what I have experienced and continue to experience. I still deal with all the same GI issues and have not received much treatment for them. This is a common misconception to those who are not chronically ill. Think about it, when you get sick,say the flu, a sinus infection, any acute illness, you get symptoms, go to the doctor, get diagnosed, get some medication, and in a few days you’re good to go. That is not how chronic illnesses work. You search for doctors and may get answers and may get a diagnosis and medication or treatment, but you don’t get better in a few days. Especially when it comes to rare diseases, some of my doctors are still learning about what it is I have- not my specialists obviously.

Anyways, aside from the physical symptoms I experience which are really difficult and scary. I am really struggling. It is hard to get validation at times because I do not present physically as a typical GP patient. Which in a sense I am thankful for, but it doesn’t make it any easier. Most GP patients lose weight when they are not receiving nutrients. I am the opposite, I gain/maintain my weight. Which, do not get me wrong,  I am so thankful for that because some of my friends who suffer the opposite way are not doing well. However, when I say I am not losing weight, doctors dismiss the fact that I am not getting nutrients. There are also symptoms besides weight loss for malnutrition or malabsorption. Which just adds to my stress that I will continue to be dismissed. Either side of the spectrum of this illness is not good and patients with GP are commonly dismissed. A good friend of mine is on the opposite end of the GP spectrum and was rapidly losing weight and her doctors still dismissed her concerns and now she has been in the hospital for about a month. Not losing weight is yes good, but there are also other issues that come with malabsorption which is why I am so concerned that I am not actively receiving treatment. Additionally I am just so exhausted with my stomach issues. 

Throughout my GI issues journey I have been on so many restrictive diets. I was saying to my dad the other day that I feel like I don’t even know how to eat anymore.  I am not sure the correct amounts because with my GP I take 2 bites and I am full but I know that I need more than that, so then I eat more and suffer the consequences. But you see, either way there would be consequences and I would rather continue to have GI issues than make my POTS worse because I am more used to it. I don’t know what to eat because I have so many allergies, GP triggers, MCAS triggers and some don’t line up. I want to enjoy food but it is really hard to. Then I get to the point where I am so frustrated with food that I’ll just eat anything and then I get more sick. I know it sounds like I am doing this to myself but if you have ever struggled with something similar even for just a short period of time you know how frustrating it can be.

On top of all the restrictions and before/during my GI symptoms increasing I have had a tough relationship with food. If you are constantly being made sick by something or your diet is always being controlled and changed I think you would too. I  have come far with my mental state with food but with the increase in symptoms recently it has been really hard. How am I supposed to want to eat food when I know it is going to make me sick anyways. It has gotten to the point that some days I forget that I am even experiencing symptoms because I am so used to it. Please don’t worry, I am still eating, it is just a frustrating thing in my daily life. 

Additionally, I am a 23, almost 24 year old who appears healthy and it can be hard for me to not let this impact how I view myself or my body. Before I had to stop sports and exercising, I was very fit and strong. I have talked about how I had to stop for about a year but now I am getting back there. This is a mental battle as well. Going from being able to do so many physically demanding and pushing my body physically to not being able to walk down stairs was/is a hard change. Now that I am getting back to being able to exercise and slowly introduce some of the things I used to do, I am struggling to see any change in my body. But if I am always bloated and sick.. how would I? For me I have days where this really gets to me, others days I am extra thankful for having the health that I do have and I am kind to my mind and body and realize that strangers or even my friends who dont understand my issues, don’t need to understand and their judgement and opinions of me do not matter. On the days where I am okay with it I often thank my body out loud for what it does for me. On hard days it is so hard not to look at other people my age who still get to do certain things or don’t have to worry about this kind of stuff yet and compare me to them. Comparison is so harmful to anyone, not just people who are chronically ill.

I know this post was all over the place so if you got this far thank you. I am trying to be a little more vulnerable about my story, but it is scary. Especially when this is something that I have struggled with my entire life. If you are struggling with similar issues please reach out to me!