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.