In my opinion, this is a very valuable topic to broach, as many people still lack the knowledge on how this disease can affect a person's life and how important a support structure is when you are living with a disabling disease.
As much as the disease is a personal thing and you are the one dealing with the physical pain, it also affects those around you. Even more so with a condition such as RA, as there is not much those around you can do in the really bad times. Yes, an arm for support is great, helping you in and out of a chair is wonderful, but this tends to make the 'patient' feel very 'patienty'. That's my new word...patienty...and I don't like feeling patienty...who does?
Especially when you're still young and you suddenly have to be helped around like a granny!
My advice: Make sure you look super stylish and wear a gorgeous smile during these times. Yes I know the immense pain can cause you to pull faces you never thought you had, and you can't exactly wear pretty heels during a flare, but this can help boost your confidence when all you really want to do is scream and cry in pain. Plus, people don't see you as a very young-looking granny, but just a beautiful young woman who needs assistance. I'm still waiting for that day when I'll be assisted by a strong, gorgeous man;)
Anyway...When asked what she has learnt from living with someone who was badly disabled, my mom had an amazingly insightful response:
"You need a lot of patience with that person and helping them find ways to get around doing the normal, everyday things. Not every day and every month is the same with an RA patient, there are times when they function as 'normal', at times she'll be on crutches and still other times I have to push her around in a wheelchair."
|Mom and me on Chapman's Peak.|
Anyone in a similar situation can attest to this. You never know what each day will be like. One day I might be feeling so good I am able to spend the day roaming a shopping mall, while the next day I can barely move my hands and need to be fed.
My mom's advice to anyone living with someone who has RA:
- Believe them when they tell you they are in a lot of pain, as this can manifest over night.
- Be patient when they can't accompany you to do things they used to enjoy.
- They are GREAT PRETENDERS because they don't want us to see that they are battling with the normal, everyday, smallest tasks.
This is the first time I have heard a very honest account of what it's like from my mother's perspective. It is the greatest thing to have that kind of support, the kind of support where you don't even need to say anything and the person just knows what you need.
It has become second nature already for my mom to extend her arm to me whenever we're together. Nowadays I don't even say anything when I don't need it as walking support, I just enjoy the fact that it's there and I know I'll be safe no matter what.
A Great Pretender :)