Notes From Fighters Part Three!

Here is part three of the answers to my question.  "If you could tell the world anything about your life with an invisible illness, what would it be?"

"Please don't back away or become distant. Now.. more than ever... is when we need a visit, chat, text, card or just an "I'm thinking about you". (I'm the mother/caregiver of my 21 year old daughter who's friends don't know what to do or say)" -Jennifer C

"We all judge others that we see...Who's fat, who's lazy, who's a degenerate and having this illness has opened my eyes to how I have judged others. People see me in my wheel chair and I am not obese and I am young so I must be lazy or faking. It is very hurtful. Some illnesses can be seen from a mile away...Some couldn't be seen if you paid someone. It is so important to remember that when we see people we DON'T know their story. We DON'T understand where their feet have walked. We need to be sensitive and if you are not sure ask. Most people are not offended by an honest and respectful question. I am not lazy, I am not faking, I am not a drug addict, I am not mentally challenged...But I am a mother, a wife, a daughter, a patient, a victim and most of all a survivor and a friend. Give me a chance and I will rock your world. Many times people ask me "why doesn't God stop illness or help?" My response "He does...He made me!!!" -April H.

"It's isolating. If I hear "oh, your so lucky you get to stay home..." one more time.  Sometimes you feel like you've been written off by the world because you're sick." -Angie S.

"I wish I could walk and play with my dog like a normal person. I hate that he's stuck laying in bed with me all the time. Don't get me wrong, he's great company and I'd be lost without him, just wish I could give him a better life and not kill myself just trying to play with him and pay for it by being in horrible pain after." -Candice W.


"That I wish I wouldn't be judged when I say I want accommodations; I want a normal job, I want to work I want to go to school, but I have pain days (actual, real, bad, pain days that are unimaginable) and I need a day off. I can't predict it so I'm going to call in and you have to suck it up, but you shouldn't punish me for it because I'm sick. I get that people fake it, and use this all for attention, but I'm not, I don't want all this negative attention I hate feeling judged and berated. I push through the pain every day, but some days it's too much and I need that day off to lay around. I have to nap after everything I do otherwise I feel completely awful. I'm not exaggerating. I'm not being dramatic. I'm being honest. I walked 10,000 steps today all at a pain level of 6 throughout my entire body. Imagine your life like that. Nobody ever knows about this, so when I complain it's a real thing. My body physically can't throw up; my veins don't constrict the way yours do leaving my blood pressure super low and my heart right so high it feels like I'm literally running all day; my ligaments are so stretched that they are what supports my entire body weight so my muscles have no strength, leading to very easy joint dislocations; some days I wake up and physically cannot even open up a Gatorade bottle because I'm so weak; at 22 I have arthritis all over my body; at 22 I have headaches daily; at 22 this is my life, yet I have to be punished for it because I can't control that it happened to me, I can't control what days I'm too tired to move, I didn't choose to feel like this, to not be able to do the things I love any more because it hurts too much. I choose to go to therapy 3 times a week and see a ton of doctors and try lots of meds. I choose to go to school and work and have a boyfriend and love my dogs; I choose to try improve my life since I didn't get to pick how I feel all the time and how I'm treated for it." -Alexandra K


"To stop asking me if I've gotten over it or its been cured when I'm having a good day. It gets exhausting to explain over and over again (sometimes to the same people and usually people from my old or new church) that no, this is just a good day... or that if you really want to make plans with me far ahead of time you should be prepared for them to be canceled and not get overly excited about it. I try to tell people i don't like making big exciting plans ahead of time because I have no clue how I'll feel or what I'll be able to do or if I'll even be able to come. I feel horrible when friends get their hopes up and get so overly excited about plans (even after i tell them maybe) only for me to not be able to come and then they are either mad or upset. I want to say "stop viewing my maybe as most likely! View it as probably not. Then you won't be let down if i can't or you'll be pleasantly surprised if i can" i hats making people feel bad but they also kind of put it on themselves after so many times." -Cosette E.

"That even though I may "look fine" when I am not wearing my braces or in a wheelchair/scooter, that I still have pain on a daily basis. Some days are better than others. Regardless, I still try to live my life to the best of my abilities, and I want people to understand that if I back out of a plan at the last minute, I cannot help it. I do not want people to stop inviting me places. I still need my friends around." -Teri G.

"I would want to ask them to think of that time they threw their back out, the time they sprained their ankle, the time they had a flu.  Now, add those 3 together and add about 187..I feel like that every day, but am still expected to function." -Cayla C.

"Just because YOU can't see my pain, doesn't mean that I can't feel it. I'm not lazy. I push through and do more than I should almost every day. Things that are easy for you are a challenge for me. I wish I felt good enough to do all the things you do, all the things I would like to do, but my body won't let me." -Jen C.


I hope seeing different perspectives helps people understand some of what we go through. :) 
Gentle Hugs!