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Different is just fine thank you

In the early stages of dealing with RA, I definitely struggled with not allowing it to define me or take over my life. When you are confronted with a diagnosis of a chronic disease like RA that promises to change your life it is easy to allow it to consume your thoughts.  To be honest I think that is quite normal and may even be a healthy way to start the adjustment and acceptance of this “new you”.  It led me to seek answers and ask questions, do research and get a treatment plan in place.  I learned to direct that anger and sadness and fear in a productive way and anyone with RA can do that as well!

Assimilating your “new reality” and what that means to you in terms of your present and future life can test the coping abilities of anyone!  That is OK and perfectly normal.  I would suggest that allowing yourself some time to “wallow in that sadness” is not a bad thing.  Grieving over any loss is an important part of the process of moving on.  I admit that for some time after hearing the diagnosis and learning what “having RA” meant, I focused on what I “could no longer do” – tennis, cooking, running and on and on the list went. It is overwhelming in the beginning and the pain and fatigue of the disease itself would try the patience and resolve of anyone!

Over time and after some success with treatment choices as well as the support and guidance and love of those on my “support team” I began to slowly turn my attitude around to a place of positivity and promise. I realized the vast majority of my life was still very much under my control (even when RA was not) and this epiphany was life altering. I began to look at what I COULD do, not what I COULD NOT do.  I decided to pursue new and exciting alternative activities like Tai Chi and swimming and suddenly a whole new world lay before me. In fact I have become much more open to trying NEW things since RA entered my life.

Added to that is a much deeper and more profound appreciation of the simple things in life I often took for granted in the past.  The simple joy of an evening walk with my husband took on new meaning after RA.  Sitting on my back porch watching the sunset with my family was awe inspiring as I learned to appreciate each day I have to be with loved ones.

For many of us, myself included, adjusting to what I can do post RA around the house was a challenge. I found cooking and deep cleaning nearly impossible and for a time the guilt over no longer contributing as a homemaker was overwhelming to me. My family made me realize that by doing tasks that just deepened the RA pain, stiffness and fatigue I was actually a lot less pleasant, productive and content as a mom, wife, sister, etc.  I have never stopped working full time since starting with RA and I knew that I could not do it all anymore.  A housekeeper every two weeks solved that problem as she does the deep cleaning I just can no longer do.

Handling holidays and traveling can be a tough adjustment too as they both often require additional physical and emotional demands. I have learned that PLANNING AHEAD may be the single most important strategy you have in dealing with RA! Divvy up the tasks – shopping ahead as much as possible, doing decorations over several days, scheduling tasks over time instead of trying to do it all on the fly or at the last minute!  Your holidays and travel will be so much more pleasant if you follow these simple strategies.

Asking for help was and still is so difficult for me.  I have to admit and my friends, co-workers and family will agree, I am not good at this.  But that does not mean I do not clearly see the importance of it and I am really trying to get better with this one. I have always thrived on being a “do it yourself” kind of gal and so this was really tough for me.  I felt I was somehow relinquishing my independence due to RA and of all the hurdles around redefining myself this may have been the most challenging one for me.  What eventually dawned on me was that if I don’t ask and accept help I will likely loose even more of my independence down the road. If I cause more damage to my joints and body by refusing to embrace assistance and support how foolish and short sighted is that?  Allowing others to step up and help actually is a great way to prevent flares, ease pain and prevent joint deterioration.  Really is a no brainer.

Resting and taking breaks is often a challenge when you are used to going full throttle.  But once again, after years of trying to buck this reality I discovered that taking timeouts actually helped to build my stamina and served me much better than overdoing it.

I can say now with complete conviction that RA is not WHO I am it is a circumstance I have learned to handle just like any other in my life from moving to changing jobs, having children, losing family and friends, etc. Am I different? You bet. But that difference is just fine! It can make you stronger (the best choice for sure!) or it can ruin your life. The choice is yours to make and it seems obvious to me….

 

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Comments

  • Cassandra Bird
    4 years ago

    Thanks Nan, I agree fully. This disease can be all encompassing, its a big shock to get used to and hopefully if I ever find the right med I will get some remission from symptoms. Asking for help tho? Well in my experience I find it very hard to do, always been a single mum so its always all been on me, now my 18 year old son is not only having to take on all my responsibility I can no longer do but is also taking care of me to such an extent I may as well be a baby! Till today I thought it was just because I hated to ask that no one wanted to help me. Today I’ve been informed that the whole town, stemming from a fellow RA sufferer who I thought better off, they all think I’m faking my disease. Cos RA hit me like a sledgehammer and has in six months affected all of me except my heart kidneys and liver…yet anyway. Who would ever fake this? Apparently I’m seeking sympathy but I haven’t seen one jot of empathy since having this disease. All the people I at one time of another helped out because I could drive and had a car, all of them think that lowly of me? Honestly the way I feel today I wish it were all over, another chest infection since starting enbrel, going just the same way as methotrexate took me….its no fun ride that’s for sure. I’ve left the house all of six hours within the last year except for going to hospital, I can’t even wash my own hair…its no life 🙁 sorry to be a downer but I just can’t believe this is how it is living with this disease and people just think it’s funny or wish it upon me. I sometimes wonder who the sick ones are! Best wishes Nan hope you are doing OK x

  • Nan Hart moderator author
    4 years ago

    Cassandra I am so sorry to hear what you are dealing with…sounds like you are getting hit from all sides. Have you checked to see if there is an RA Support Group in your area? I did not have one here so I started one and it was one of the best things I ever did. No one understands better what we go through than others who have this disease. I have had it for over 20 years and it remains a challenge. That said, as time goes on you learn the strategies and tools to move forward I promise you. If you ever want to chat privately feel free to contact me at nmhart14@aol.com. I totally understand what you are going through. There are lots of wonderful online forums available as well so you can chat and share with others with RA. Believe it or not that can be amazingly helpful. Take care and please stay in touch! Nan

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