young with chronic illness

When you are young and have a chronic illness your age makes it extra fun: (sarcasm warning. It's how I handle my life.)

1. you get to hear "you are too young for all this" ALL THE TIME. nah I am really 90. derp.

2. Most "men" are not mature enough to handle all that goes along with chronic illness and a relationship together.

3. The concept that your illness may follow you for the next 60 YEARS of your life is possible. That is a long time in case you forgot. Be sensitive to this fact. We don't like it anymore than you do.

4. Knowing that there is no set treatment course that works for everyone, it's just a trial and error journey which is not very fun in case you wanted to know.

5. The next 60ish years of your life are entirely unknown. Will I ever be able to work again? Will I have to do IV fluids everyday for the rest of my life? Will I continue to have seizures? Will the muscle pain from my bodies inability to regulate electrolytes ever stop? This is on repeat in my brain and many others who suffer from a chronic illness as well. We feel like we should be working and raising a family and everything that the "typical" women is "supposed" to do in life but the illness gets in the way of moving forward in life and that can be heart breaking so don't rub it in. Please.

6. It seems so wrong that not only do we have to deal with being in our 20's with passing out spells, muscle pain, immobility, daily IV infusions, and the many physical aspects that follow, it takes it's toll on you emotionally just not knowing anything. I am going to give you a glimpse into my psych for a second. I know scary. Just keep reading and you will find it.

7. I have noticed a lack of understanding and empathy that only goes with young people its as if they cant believe you are sick and then they switch and refuse to believe it because apparently you cant be young and ill. I didn't get the memo.

8. Yes I use a cane, wheelchair or rollator. Yes, I rely on them. You can say all you want about how we young people should not rely on them because we can't use it forever. Well, guess what? I won't have a future if I can't move around despite having these devices. It is the only way to go places sometimes. If it helps you get out and about then use it as much as you want.

9. Your illness and pain is real and don't let ANYONE tell you otherwise. Just because we are young and "ill" does not mean it is all in our heads no matter how hard it is for YOU to grasp, it is as real as anything else.


---If no treatment is found this is what the course of my life looks like at the moment. Yes, before I begin there is hope for change and I am well aware of that but if things continue like how they are now my life looks like this: Also enter Jesus here because He is the maker of my days.

ahem and this is my life: Continuous daily infusions of IV fluids with doses of Benadryl and an anti nausea med put in me to keep me from (usually) puking. Every week I have to have this needle removed from my chest and a new one replaced as well as a check of the consistency of my blood due to being high risk for blood clots. I cannot stand and walk without at least being shaky and at any moment BAM I could collapse. I live in a constant state of anxiety over having another seizure which the neurologist said is possible while we regulate my meds. It is scary not knowing if each time you stand up you might have a meeting with your BFF the floor. Waking up in severe muscle spasms because my body no longer regulates it's own electrolytes and I have a buttload of over the counter ones to try to replace what my body fails to produce on its own which only semi-helps. I have no appetite and ever since I got sick I am down 50 pounds due to a lack of appetite and taste bud changes. I cannot be in a vehicle for more than 30 minutes without feeling sick. A lot of days I can only make it to the bathroom and then back to bed, not because I am lazy or milking it or being dramatic but that is all my body will allow unless I go around passing out all over the place which is dangerous. blood thinners uuhhh yeah, no falls for me.

--In conclusion, most of the people with POTS have all inward symptoms which is why people tend to not believe us. Please tell me how you think I should look and I will get right on that. There is a massive war going on in our bodies that cannot be comprehended and people to step up and instead of showing anger, bitterness, and mistrust of the one struggling just because it isn't visible to you. Chronic illness for most of my life since I was 15 has given me a glimpse into the hearts of those who refuse to be compassionate and try to understand what others are going through instead of being like oh no they are too young, they cannot possibly be fighting for life. Well, we are, I am. It is a fight to get up everyday. Sometimes, just to open my eyes but it is real. Now that you have experienced a scary look into my brain I pray that this gives you a different perspective and a sense of compassion and love for those around you who are suffering more than you know. Please listen and support your fellow man but please please please don't throw out "try this it will cure you" oh look "here is this thing you can drink that will heal you and all the specialists in the world have not heard of this cure" Sarcasm again. I am very confident in my doctor and if there was a cure I am fairly certain she would know about it by now so just please don't even go down THAT path. It ends up being hurtful.

I hope this has given you a glimpse into how hard it is to be young and facing the above realities for decades. Jesus is our hope and strength but we can use encouragement from others just to feel less alone. Chronic illness is majorly isolating and I am down to a handful of close friends but I have lost most of them. I get a lot of support from the "older" crowd but only a handful of supporters that are my age. It is beyond hard to be young and ill so please pray for those around you that may be facing various trials in this life.