Voices Of RA: The Caregiver

Today’s post is dedicated to all the caregivers out there.
They are true unsung heroes.

unsung hero

Rheumatoid Arthritis Guy has a partner of almost ten years, who has been by my side during every step of our journey through rheumatoid arthritis. From attending every doctors appointment with me, to picking up the slack around the house, to giving me a shoulder to cry on, to putting up with my moods when I wake up with one of my “angry at the world” moments, my partner bravely faces the challenges of rheumatoid arthritis with me, day by day.

Rheumatoid arthritis impacts not only those of us living with the illness, but it also has a profound effect on those people who are part of our daily lives.

Today, I have asked my partner to write a few words on the caregiver’s perspective of living with rheumatoid arthritis.

There are so many things that I can talk about as the caregiver of someone with a debilitating condition, such as rheumatoid arthritis. But I would like to concentrate on three things that have helped me cope with this lifestyle: 1) allowing myself to experience all of my feelings, 2) recognizing that this illness is not only my partner’s – but mine too, and 3) learning to give myself time to rest.

What do I mean by allowing myself to experience all of my feelings?

As a regular human being, and a person that is in love with an individual that has a debilitating condition, I find that I often experience a full range of emotions that sometimes makes me feel angry, guilty, depressed, selfish, etc.  (Once in a while I go through a series of emotions all at the same time!)

What I have learned by living with my partner, Rhuematoid Arthritis Guy (or should I call myself his sidekick? Maybe…maybe not) is to be honest both with myself and with my partner.

Sometimes I have the right to feel angry, because I might feel neglected or invisible…

Sometimes I might feel guilty, because I might not be there in a time of need for my partner…

Sometimes I might feel depressed, because I cannot see a light at the end of the tunnel…

Sometimes I might feel selfish, because every now and then I want to be the superhero in some of the adventures…

Having all these emotions (and plenty other ones that I don´t have the time to talk about) does not make me a bad person or good person – it just makes me a regular human being. This is something I have had to learn! I have the right to have all these emotions! Once I recognized this fact, I think I became a better caregiver.

So now, I am a just a little better prepared to take part in the adventures of Rheumatoid Arthritis Guy!

On this journey though the land of RA, my partner and I have learned to depend on one another, while facing the fact that both of us are affected by rheumatoid arthritis.  This realization did not come easily (did I mentioned I am a mere mortal?) to either one of us. At the beginning, we both felt isolated from one another.  I guess we both went through all the stages that psychologists talk about: anger, grieving, denial, etc.

But in the end, I think it was easier for me to come to the realization that we both needed to put our battle outfits on if we wanted this relationship to survive. I think that it was easier for me to come to this conclusion – not because I am smarter nor am I a genius – but because I only have to deal with the emotional baggage that rheumatoid arthritis brings to a relationship, and not with the actual emotional and physical anguish that a person with rheumatoid arthritis has to go through every day.

I am happy to say that at this point, we are doing better in the communication department – and we now know unequivocally that we are there for one another.

Last but not least, as my partner continues to learn the importance of rest, so do I.

For more information about caregiving and online support groups for caregivers, please visit www.caregiver.com.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

6 Comments
6 comments
  1. Sara says:

    That was really beautiful- Thanks to you both for giving voice to the often uncredited but crucial role caregivers provide-you are both lucky to have one another on this crazy adventure!

  2. Cathy says:

    Wowzie! RA Guy, you are one lucky person! With each paragraph I read, I visualized my wonderful caregivers – my husband and two children. This isn’t easy for them either, but we are so thankful they are on this journey with us.

  3. Prof says:

    I was very moved by this post and appreciated your partner’s openness on the effects of living w/ someone w/ a chronic disease. That is definitely superhero material in my book. Kudos to both of you for finding a way to strengthen your relationship with one another through living with RA.

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