I have been reading a lot recently about how others deal with having an invisible illness - mainly because I have started to get frustrated by certain things, such as wishing someone would see it when I am in pain. So I have decided to share ten of the things that I have come to realize myself, in the hope that it will make people understand me better - or if not, just the hope that saying it will help.
So here are ten things about me that you may or may not know;
1. I have more than one illness....
Lupus is one of those diseases that never comes on its own, it always brings its friends with it. I have a variety of illnesses that range in severity - Raynauds Syndrome, Livido Reticularis, Fibromyalgia and Sjorgens Syndrome - to name a few although I test positive for others at times.
2. I have to make adjustments everyday
In my everyday routine I have to make many small adjustments so that I can function like you. This includes eating at certain times so I can take my medications, say no to drinks after work (something I hate to do) and make sure that I get up and walk around every hour or so - to stop my joints from stiffening up. You may not notice these things, but they have to be done in order for me to live.
3. Some people assume......
I vary rarely look sick, normally only when I have the flu. I have had many friends who truly believed that I am just lazy, boring because I never go out or simply just sad/shy. I have never been a lazy person, I love nothing more than going to work, hiking on Saturdays and writing, but because I can't go out as much or physically do as much I am deemed as lazy. This has not just been friends, this has been colleges and even doctors.
4. My favorite home remedy...
A good old fashioned hot water bottle. When my legs hurt, my tummy is upset and I just want to be cosy in my pajamas. There is nothing better than the feeling after a long day; having something warm against aching joints and sore muscles. If I was to take one thing to a desert island this would be it - although I have no idea how I would heat the water up.
5. My worst symptom is....
Pain is probably the hardest thing for me to deal with, mentally speaking, it is simply draining. My hands and feet are the worst affected areas with the pain almost constant throughout the day. recently I have found the fog very debilitating too; still it doesn't come close to trying to hide the constant pain.
6. How to tell when I am having a really tough day...
I will go quiet, withdrawn and possibly grumpy - no I will be grumpy. Usually this is last thing at night if I have done a lot throughout the day and will generally be caused by pain. So if I have gone quiet, or I am answering you in a grumpy way....please don't take it personally I will be in the midst of an epic battle.
7. Being diagnosed is not the hardest thing I have ever done...
There are many things in life that we may or may not have to face at some point. From the loss of a loved one, struggling with debt or being diagnosed with an incurable disease. I have done each of these and each of them has their own scars that I wear with pride. We all have a story to tell and mine is not just that I have Lupus.
8. There are many things that I can still do..
I am not going to break, something that many people can't get their head around. OK, so I have had to stop some of my favorite things to do like going out until 3am or living my life in a free way, doing what I want when I want. However that doesn't mean that life has ended - far from it. I can still exercise, I have discovered the joy of relaxing with a good book and I probably spend more time with friends - just at home rather than in the pub.
9. What has been the hardest thing to accept?
For me it has been hard to accept the unknown, especially when it comes to Lupus - which seems to be more sporadic in its attack the older I get. I can't say 100% that I have accepted the unknown just yet, I still struggle with worrying about the bad days and panicking about my latest test results....but I am working on it and eventually I will simply accept it.
10. Would I rather have a visible illness?
This is probably the hardest question to answer. Honest answer, no I wouldn't want a visible illness, I simply don't want any illness. There are times when it would be nice for someone to see me struggling, but that doesn't mean I would want to change. I have an invisible illness and that is why there needs to be more awareness and education.
P.S
Here are some of the things I will say and what I actually mean...
"I am fine" = "I feel like death and need a hug"
"I am strong today" = "I am weak today and need to remind myself I am strong"
"I'm just tired" = "I could sleep for the rest of my life"
"I think I will be OK" = "I am not sure what is going on really"
"Can we take a rain check?" = "I am too ill to go out but I do want to see you"