March 20, 2013. My life changed. I was diagnosed with Fibromyalgia, which is widespread musculoskeletal pain.
Nearly 6 years later...I was diagnosed with Endometriosis or Endo for short! Endo is a painful disorder where the tissue that normally lines the inside of the uterus grows outside of the uterus like the bladder.
21 years old and two chronic illnesses later...Where do I even begin?
Should I tell the story about how I fell down a flight of stairs on my 16th birthday that started this mess or should I fast forward to now as I am penning this letter to you. Hmmm…
I think I am going to fast forward, I do not want to bore you with my problems.
How do I sum up life with two chronic illnesses and ohh...did I mention PCOS and Pelvic Floor Dysfunction in less than a 5 minute read.
Let me start off by saying that apologies and pity do not help, trust me people have tried and it never seems to work out.
I understand (well at times) that I will have to live with these illnesses for the rest of my life and there is not much people can do for me besides being PRESENT. Yeah that is as much anyone can do for me.
Over the counter medicine does not work, oh and forget surgery, it does not work either. I am in the process of changing my diet and getting back on birth control. LADIES, stay away from the IUDs!!! I personally do not recommend, but do not take my advice. Please remember to consult your medical professional, as I am only a 21 year old who has been screwed by medical professionals one too many times.
Anyways, back to my story. Where was I? Oh yeah support! Support comes in many different forms. It is received differently by different people. I can say that the number one way that I like to receive support is by people treating me the same, but in special circumstances being EXTREMELY PATIENT with me.
What do I mean by that? That means if I cancel plans with you do not assume that I want to flake out on you or if I am having a moment do not stare at me like I am a chicken with my head cut off. It is extremely uncomfortable.
Now, when I was diagnosed with Fibromyalgia, I had time to "grow up" or "adjust". I had months of recovery and time to really wrap my head around what was going on with my body, unlike when I was diagnosed with endo, I did not have the time to “grow up” or “adjust”. I was back at work and school in a week.
I have a lot more things on my plate. Maybe I am being immature or making excuses or maybe it is just simply me being a human being who needs a little more time than others to process what the HELL is going on in her body. Who knows?!
There are other things that have affected my transition and reality check. I became super clingy and emotional. I have cried so much in this past year, it’s actually scary. I don't even know what I cry about. Again, I do not need your pity and I am not trying to play the victim. Just casually admitting how much of an emotional wreck I became.
Again, no pity party needed, but what I do want people to understand is that you never know the demons that people face physically and mentally. Chronic illnesses like mine affect THOUSANDS of people each and everyday, but more importantly, thousands of people are dying as well because of it.
If it is not by their own hands, its because medical professionals are either not properly trained or cannot seem to get to the root of the problem fast enough. Women and even men are living in excruciating and debilitating pain for years and years.
I complain that I had to deal with endo pain for almost a year now. Fibro for 6 years, in all reality, I am blessed. Women in similar situations like mine are suffering for much longer.
I want people to understand that living with a chronic illness or other health related issues is extremely hard. It is a weight on people’s shoulders that they DO NOT want to deal with, but have too and having people in their corner helps to alleviate some of that burden. It is nice to have conversations with people who are willing to listen and want to understand and not dismiss what they have to say.
I want people to understand that if you or someone you may know has been diagnosed with any health related issues or illnesses, please be open. The people that do not care to understand are NOT your people. I had to learn that the hard way. Do not take it personally (even though I did). It is okay to be upset, hurt, and cry about it, but have faith that God is going to deliver the tribe of people that do want to be in your corner.
I also want people to understand that you are not alone. It might seem dark and empty at times, but you are not alone. Get connected to a community. Reach out. Go to counseling. Seek professional help. I am still learning how to take my own advice, but I can definitely say that once you change your mindset your situation changes.
I completely understand that it is easier said than done, but I want every person to know that you are worthy. You are more than your illness or illnesses. You are more than the pain. You are more than the hurt and betrayal. You are capable of absolutely anything that you put your mind too. You are truly amazing and beautiful in your own way. KEEP SHINING DARLING!
