Featured Topic Relationships and Dating

Finding a shoulder to lean on

Rheumatoid arthritis health activist Nan Hart

By: Nan Hart

Nan was diagnosed with moderate to severe rheumatoid arthritis when she was 42 years old. She now volunteers with the Arthritis Foundation, serves on many community boards, and runs an RA Support Group for her region.

The patient advocates featured in this section share their experiences of living with moderate to severe rheumatoid arthritis. Please note that these stories are not meant to represent patient experiences with any specific treatment. They may or may not be taking an Amgen product to manage their moderate to severe rheumatoid arthritis.

Rheumatoid arthritis support

Relationships with loved ones do, indeed, change with the onset of a life-changing disease like rheumatoid arthritis. One of the most obvious ways is by the amount of support each of us needs to cope with RA. We are all very different in how much support we want and need. Because RA is not a constant but rather a continually changing dynamic, it really becomes a challenge to figure out how much support we need.

I know, for instance, that when I am in pain I would love a bit more assistance and even some inquiries about how I am doing, how my day is like pain-wise, and how can someone help. Being able to vent to someone is a priceless tool for when I am not doing so great or just need a shoulder to lean on. This offers such relief and is very useful, not to mention practical, in going through the day-to-day tasks that need to be accomplished.

So this brings me to the epiphany that eventually came to me. As difficult as it may be, it makes complete sense to take the time to sit down with our support team (family, friends, etc.) and share with them what we do need. It is really crucial that we share the fact that what we tell them will change and checking in will be a part of the process. To not do this breeds anxiety, stress, more pain, disappointment, frustration, and a host of other bad emotions that only serve to make the situation worse, and to curtail positive management of RA and damage our relationships.

In addition, developing a consistent, respectful, and ongoing relationship with the medical and professional team you work with is vital. I can talk to my rheumatologist and primary care physician about any aspect of RA with the confidence and knowledge that no question is foolish or wrong. This respectful relationship should extend to the staff at the physician’s offices and hospitals, as well. They are an important group, and most of the time they are the first line of folks we deal with when making an appointment, or calling with an immediate issue that needs to be addressed. Treat them with the respect and admiration they deserve. They are so busy, and often under-appreciated and overworked, so be patient, kind, and caring, and it will serve you well.

Finally, I simply had to accept that counting on and turning to others had to become a part of how I operate now. Gone were the days when I could pretty much make all the decisions and handle all the responsibilities myself, which can be very unsettling. No one likes change when it is forced on them, and RA is not a change anyone would welcome. But how we learn to adjust to it is largely up to us. I decided I was not willing to give up the "essential" me, that is, the person who loves to laugh; read; watch fireworks; swim; dance; go to movies and plays and concerts; cuddle with my husband, my children, and my dog; and so on. All those things that really define me have not changed, nor will they. I will not allow who I am to be determined by a disease. It is a choice I have made, and one that has served me well for many years.

Featured Topic Relationships and Dating