I was diagnosed with systemic rheumatoid arthritis at the age of five. I was born to a steelworker and a housewife. We had good insurance and income until my father was laid off and then we had very little. I was raised to think nothing of the arthritis; instead, I was told by more than one health professional that the RA would likely go away by the time I was a teen. In 1974, there were few options for anyone who had arthritis let alone for children with the disease and even less was known about it among the lay population. By the time I reached adolescence the disease was not the only major thing going on in my life so it took a back burner to everything else life dished out. In fact, I never considered myself sickly and was always surprised when someone showed me sympathy for the disease. I had no idea what it all meant and no one in my family knew more than just the basics. You must remember that it was the 1970’s and personal computers were in their infancy and far, far, out of reach for my family even if it had been offered to the public. Hence, there were not many places to look up information about childhood diseases. Additionally, I was one of three children and that left precious few hours in the day. The mindset in those days was to listen to the medical professional as if they held the only truth and this was even more pertinent to the blue collar sect and all those below.
The good that came from being raised in this type of atmosphere is the fact that I did not even think to feel sorry for myself, nor was I allowed to baby myself. The thought not to do everything the other kids did never crossed my mind. I was sick, a lot, but I never thought of myself as a sickly kid because I was not treated as such. I do not remember a day without aches and pains so this became my “normal”. I just assumed everyone dealt with what I had to each day. This was my life and I did not question it; instead, I lived it. It was not until I was in middle school that I began to realize that there was something that set me apart from the rest; however, it wouldn’t be until I reached college that true understanding would come. Even then the disease was pushed into the shadows because I did not have the time, energy, or desire to deal with it. I had been determined to be “normal” ever since grade school when the other kids began treating me differently. I did not have medical insurance between the ages of 17 and 27; therefore, I treated the symptoms of the disease with high doses of OTC aspirin. I was never attracted by the drug or alcohol scene so that factor never became an issue.
At 42 years of age, I have been dealing with inadequate care for this progressive and aggressive disease for the past 37 years. It has not been an easy path to walk, both literally and figuratively. There have been moments when I could not bear the thought of spending one more moment in pain let alone the next 60 years. If you allow it, this type of disease will rob you of everything. It will destroy who you are, who you hope to become, and how you are remembered years after you have passed. It will steal your happiness and contentment. It will annihilate your dreams. It causes hatred, bitterness, and envy to build to nuclear levels of destruction until you do not even want to be around yourself. However, it can only do any of these things if you allow it too. The only thing this disease will do with 100% certainty is corrode your body but it is up to you to decide if you will spend the rest of your life waiting for the torture to finally cease or spend each moment living toward fulfillment and peace. Trust me when I say that these words are not spoken lightly, for I continue to carry the weight of this burden even now. I have made plan after plan for my life but they have not come to fruition. Despite the strong desire to do otherwise, I have not given up. I am not a super human person resolved to be tough regardless of the pain. On the contrary, there are many a day where I crawl into a hole and pull the dirt in behind me caring little for anything outside my misery. Each moment is a battle. Some are victories and some…are not.
What is the key then? What turns the tide? Hope. Hope will give you strength; therefore, you must become determined to find that which gives you hope. For me, it is my relationship with my heavenly Father. My hope rests in him and I take comfort in knowing that my body will be whole again someday and that there does exist a day when I will awake without pain. There may be no cure from the medical community; therefore, I do not waste my time hoping for one. Instead, I pray for strength and endurance. I pray that I might glean wisdom through my sufferings. However, there are many a day where I pray for all just to stop. When you are chronically suffering, I would consider you ill balanced if you did not think, ask, or pray for release from the pain at some point or another. I draw heavily upon the strength of Christ Jesus because this frail body cannot do it alone.
At five years old, I had no idea why I could not walk. I had no idea why I was in so much pain or why my mother cried. I had no clue of what was to come or how difficult the road would become but I still hold to my hope even if it has been translucent at times. Do not give up, do not surrender, and never tell yourself that the fight just isn’t worth it.