To wrap up a week filled of health conversations over on my Instagram (@maiacoreen), I wanted to do something a little different. I am sharing with you a discussion I had with a friend about support and chronic illnesses. If you did not know, I have two! I have Fibromyalgia, which is widespread musculoskeletal pain and Endometriosis which is a painful disorder where the tissue that normally lines the inside of the uterus grows outside of the uterus. Did I forget to mention that I also have PCOS and Pelvic Floor Dysfunction. Enough about me though! If you do want to know more about my life with two chronic illnesses, make sure to go check out my previous blog post “LIFE WITH...”.
This post is not from the perspective of someone who is enduring the pain (ME), but from the perspective of someone who watched as a friend screamed in pain for months on end (6 months to be exact) with no answer. Let me introduce you to a good friend of mine, Dominick!
I asked Dominick a series of questions, that I think would greatly add to the conversation about chronic illnesses because he offers a totally different perspective as he is not the person enduring the pain, but has seen how this illness affected me on multiple occasions and supported me throughout my entire journey. Read more to find out what he had to say.
Q: Dominick, when did you learn about endometriosis, fibromyalgia, and other health related illnesses?
A: I did not have any prior knowledge of these illnesses, I learned about them through your personal experience and by being around you
Q: Have you done any research on chronic illnesses like endometriosis and fibromyalgia?
A: No, I haven't, anything I had questions about I would just ask you.
Q: Dominick briefly walk me through the story of the first time you saw me experiencing the endo pain, (mind you at the time we both did not know this is what I had). Here is what he had to say.
A: One day we went to look for a desk chair for a desk that I had bought and before we got out of the car you were screaming in pain. I was trying to take you to the emergency room but you refused, neither of us knew you had endometriosis at that time but that was the time we were wondering about it.
I want to fast forward, so that you can read this post in under 10 minutes… I do not want to bore you with all the details.
So, I asked Dominick, what was his initial reaction to my diagnosis and he said:
A: After you were diagnosed with it, I wasn’t surprised, I expected something to be wrong with your health
I felt the exact same way. I was not surprised because that is what my family and I suspected for awhile before the surgery happened, but it still sucked if I am being honest. Enough rambling let’s hop back into the discussion. I asked him about support, as I talk about the importance of support A LOT, so read further to see what he had to say:
Q: Dominick, what has been the hardest part about having a friend with a chronic illness?
A: Since there is no real immediate solution, the hardest part was trying to figure out how to fix it but realizing you just have to wait it out.
Q: What is something that you have gained from being informed about chronic illnesses and other health related issues?
A: I personally haven't gained anything from it other than knowledge about it
Q: What ways have you found to be the best way to show support and worse way to show support?
A: The best way to show support is reminding them to do certain things (e.g. booking appointments with the doctor, asking if they took their pills) worst way to show support is by giving in to all of their demands while they are in pain.
Q: What ways have you created boundaries and kept the balance in your friendship, as it might be difficult at times?
A: Just by reminding myself that it's going to happen eventually and I just need to be prepared for it
Q: What is one thing you would tell someone who is a friend, family member, etc. to someone that does have a chronic illness or other health-related issues?
A: Help, but do not forget yourself, don't be an empath, push them to do certain things (i.e. the right things of course), and realize that you can only do so much to help an incurable illness. In other words, don't think that their illness or their episode is your fault, it happens.
Q: What is one thing you would tell someone who has a chronic illness or other health-related illnesses?
A: Make others aware so they won't be shocked when it happens, stay on top of your shit, don't put other things (e.g. job, school...etc) over your health
Dominick shared some great advice for people with health related issues/illnesses and for people that are in the supportive role as either a friend, partner, or family member. Support is important!! Support is necessary!!
Support comes in many different ways and forms. It comes with a lot of trial and error, especially when you do not know exactly what is going on in the other person’s body. This is where communication plays a huge part on both sides. Something that I had to learn and I would say I am still learning how to do better.
I do completely agree with Dominick the worst way someone in the supportive role can show support is giving into all of the demands. Let me give you an example. I am going to be completely transparent I have overdosed on over the counter drugs. No, not to the point that I passed out or had to go to the hospital, but other side affects arose like loss of appetite and various other things, but that’s not the point of this post, right?!
Anyways, Dominick and my family members had to use their discretion when it came to endorsing my behavior of over consuming drugs, at times it worked and other times it did not. I am still learning self-control is KEY! I used drugs as a way to drown out the thoughts in my head and the feelings in my body. Little did I know that everytime I over consumed I was making the problem worse.
People in the supportive role(s), see things from a completely different perspective, often times a CLEARER perspective. I saw my demand for more and more pills as a way to alleviate the pain and well on the flip side they saw it as my death sentence.
The constant feeling of being overwhelmed and consumed with pain on a weekly, maybe even daily basis is hard for anyone to bear, but one thing that I can say that really saved me from me was my tribe of people. That included my family and my friends, who called me out when I needed it most, even when I did not want to hear it.
Find your tribe! Find the people that care about you even when you do not care about yourself at times (trust me, it happens more than you think). Find the people that will stick by your side no matter what. It is important to find a community to network with, it does not have to be your friends, family, or even your work buddy! In this day in age, you can find just about anybody on the internet (literally).
To someone who is in the supportive role, understand that it is trial and error and as Dominick said, it is not your fault it happens. It will happen more times than you think. Also, do not forget to create space and boundaries for yourself, so that you can be an even better advocate and supporter! Learn their body, learn what hurts, what feels right, and does not feel right. LEARN AS MUCH AS POSSIBLE! ASK QUESTIONS! Trust me we rather you ask then look at us like chickens with our heads cut off.
As supporters and fellow spoonies, continue advocating! As Dominick said, “make others aware”. This is vital! Find ways to communicate, again it will be trial and error but find what works. If writing everything out on a piece of paper works, then DO IT! If openly talking about it on Instagram or some other social media platform, then DO IT TOO!
Continue communicating, as it will benefit everyone. This will create space for all parties to be completely vulnerable and better support this special relationship! BE LOUD! BE VOCAL! OWN YOUR BODY! RESPECT YOUR BODY! LOVE YOUR BODY!