This year has been an emotional roller coaster for me. Much of it I have shared publicly to the point my sister complains that I share too much of my life on social media.
She’s right though, I do share a lot of my life out into the World Wide Web because I believe that is what social media was designed for. Its a chance to share our story with the world in hopes that something from our life can make a difference in another’s or we can find support and strength in our times of need. Its a large scale anthropological experiment on mankind to be able to truly see what kind of species we are and maybe find some meaning in all the craziness and chaos.
In all honesty though, I’ve left out a lot of things that have happened this year and a majority of what I’ve shared has been down-played a lot. Why? Because there’s that fear of exposing a part of oneself to mockery, ridicule, or criticism. The fear we all feel anytime we talk about ourselves or post something about our life to people we both do and do not know.
So what I’m about to share is something very few people know about and that I’ve been told I should keep it to myself. I don’t feel keeping it to myself is the right thing to do though. I feel sharing my story could also help someone else, whether its with the same problem I have or with something completely unrelated. Just seeing that someone is brave enough to share that personal part of their life could encourage someone to get help for theirs.
So here it goes:
I was diagnosed in July 2013 with Mixed Connective Tissue Disease. Its a rare autoimmune disease that can best be described as an ‘overlapping disease’. What this means is, my body looks at itself as a foreign entity and attacks all the connective tissue, on top of giving me symptoms of systemic lupus erythematosus (SLE), scleroderma, and polymyositis, (and can sometimes include rheumatoid arthritis and Sjögren’s syndrome).
This document has so far been the most informative about the disease, so instead of going into long, drawn out details you can read more about it here on your own time.
Why am I sharing this?
I want this blog to be my outlet for dealing with it. Here I feel there is more freedom to discuss such topics rather than on Facebook and I feel there is a greater chance of my being able to reach out to those with a similar problem. Whether its to help them or learn from them, this is the place I choose to do it.
Also, because I want people to understand.
For a long time I was judged by others saying that ‘You’re too young to feel that way’ or ‘If you do this and this all that pain will go away’ and even the occasional ‘Its all in your head, stop trying to get attention.’ And for a long time I battled depression because no matter how hard I tried to do what others told me or stay positive I still always felt sick, always in pain, and people kept calling me ‘lazy’ or ‘hypochodriac’. I honestly felt like I was stuck in Hell.
Now I know what is wrong with me and I am finally able to give what has plagued me for years a name and a way to get it under control (not cure, because unfortunately there is none). I’m not saying I will use my illness as an excuse not to do things, because trust me I am still trying to keep an active lifestyle. I’m trying to stay one step ahead of this illness as much as possible and so far I’ve been doing a good job, however I do still have bad days.
I don’t want pity from anyone. That wasn’t my intention when I posted this. I don’t want people to read this and say they ‘feel sorry’ for me because I am not sorry. Yes it sucks I got stuck with something I’ll have for the rest of my life, but if my history has proven anything its that I’m a fighter. I won’t go down without a fight and I will use every breath I have to come back up and do it all over again.
What I want from people is encouragement, support, and understanding.
If you have a question ask me about it. I will answer any questions as best as I can. I want to be able to help others who may be going through a similar situation and show that no matter how terrible something seems you have the power within you to reach out to the world and find love and support from the most unlikely of places.
So to those of you fighting the same battle I am, I say to you keep fighting. Don’t pay the Devil his due as my stepfather once told me. Don’t give in to it. Keep your head up and stay strong. Know that even though you’re suffering now there’s always the hope of a better tomorrow.
For those of you who are not fighting it and who have no idea about it, or know someone who is I ask you to be understanding. This disease doesn’t always manifest itself outside a person. That doesn’t mean they’re not sick though. Just because they look like they can run a mile with no problem, don’t ask them to. Don’t try to give them advice such as ‘Well if you do this…’ or ‘Can’t you just…’ and definitely avoid the ‘Stop making a big deal…’ ones. You have no idea the amount of pain a person is going through on the inside – physically, emotionally, or mentally- nor would you want to. So please, if someone is telling you they’re not feeling well or they’re not up to it, don’t ask them a million questions or try to give them advice. Just say, ‘OK, let me know if you need my help with anything.’ and be done with it. Chances are, they will need help and will ask you when they are ready to.
Stay strong my friends.
Thank you all for your understanding and support.