Tuesday, April 8, 2008

ADD, the Invisible Disease of RA

Doctor - What are your mornings like?

Patient - I wake up in pain. The kind of pain that I did not know anyone could live with. I take my medication. I go back to bed.

Doctor - And, does the medication stop the pain?

Patient - No, It just takes the edge off it.

Doctor- Does sitting, standing, or lying down help your pain?

Patient - Usually lying down with my legs propped up helps.

Friend - I came by to see if you wanted to go to lunch.

Sick Friend - I would love to get out of this house. However, I have been in so much pain today. I am afraid I would not be very good company. Maybe we can try it another day.

Friend – But, you do not look like anything is wrong with you.

If these words ring cold in your ears, you, like me, are probably suffering with the Autoimmune Deficiency Disease of Rheumatoid Arthritis (RA). With RA, the body fights off infections. However, once the illness has healed, the body malfunctions and continues fighting as if the disease is still in your body. It then attacks parts of your body that are perfectly healthy. Joints and internal organs are at risk. Having suffered with Arthritis for over thirty years, I cannot count how many times I have heard those words. "You don't look like anything is wrong with you."

At first, we accepted the statement as a compliment. You think to yourself, "At least I don't look as bad as I feel." Nevertheless, as it continues to ravage your physical frame, those simple words start to cut into your spirit. Maybe the person is attempting to pay you a compliment. On the other hand, maybe, when they cannot see any visible changes in your appearance, that person simply cannot phantom that you could be as ill as you say you are.

No matter what their reason, we need to hear and feel the validation. "Yes, I can tell you don't seem to feel well today". "Yes, I see you are moving slower and with great difficulty". These are words, you may never hear. Not even from your doctor. The absence of these words is what sends so many of us into depression and eventually to a psychologist.

Our world has changed forever. To stop the pain, we will go through many treatments, medications, medical procedures, and operations. If we are lucky, we find something that gives us temporary relief. After all, that is actually what all the exercise, change in what we eat, and the barrage of medical treatments are for. We simply want to stop the pain.

For years, many of us conceal our illness from our employer, our family and our friends. We do not want to be different. We cannot afford to lose our job. Or passed over for a promising promotion. We do not want our family to think that we are needy and our friends to think that we are no longer fun loving. We want to appear as normal as possible.

RA eventually makes decisions for us. We finally conclude that we are going to have to end our careers. Our getting dressed for work used to take a casual hour. Now, it may take two or three hours. On the other hand, we may start getting ready for work and simply do not have the energy to push ourselves any further. We reluctantly return to bed, maybe for that day or maybe for that week. RA does not operate within our timetable and neither does the depression that so often accompanies it.

Usually, we only let people in when the illness has become chronic. Our bodies have deteriorated to the point that we must enlighten others of our inability to take full care of ourselves. Our being told, by well meaning family members, "you just needed to get out of bed", does not give us the energy to get up. Our being cautioned "You are on too much medication", does not stop the unbearable pain that we, not the well-meaning love one, are experiencing without the medication. There is little sympathy or understanding for suffers of the invisible illness of RA.

As time passes, our invisible illness starts to outwardly show its' ugliness. By that time, we have usually experienced years of chronic pain, feelings of separateness, miss understanding, and our social calendar is nonexistent.


Rheumatoid Arthritis


Pain Blocker

Chronic Pain





Valerie said...

Wow, I read a couple of your posts and it really really hit home. My mother has had RA ever since I was a baby. It has really affected the whole dynamics of the family, and I'm trying hard to understand where she is coming from. I feel like my mother has so much negative energy pent up inside of her, and I wonder if that is what caused the RA. It's been hard to deal with her illness because I feel like she has given up hope completely. I encourage her to seek alternative treatments, but she doesn't respond. It gets me angry that she's not making an effort. What should I do? I hope to hear from you.

Mckay K said...

Valarie, please understand that I am not a physician or psychiatrist. I can not give medical advise. I can, however, relate my life experiences to you.

Specialist say that RA is caused by the body's immune system attacking itself. Whether your mother's negative energy cause it or not, I cannot say. I can say that once becoming ill, the negative energy is not helping her.

I can say that you cannot change her. If she is not willing to seek other avenues that may help her, then that is the place she has chosen to stay. Accept that, for what ever reason, she has chosen to live her live in a dark none productive place. Then move on with your life.

You can help yourself by changing yourself. You can change the way you interact with her.

Understand that she is in pain that you cannot imagine. No one who is not living with it can imagine it.

I saw the results of it in individual family members; the bent backs, the crocked fingers, the slow movements. However, I did not understand that pain was also attached to these physical changes. I certainly could not phantom the dept of the pain.

You did not say if you share the same home. Or, if you are an adult or minor. The answer is different if you must be with her.

If you are a care giver, be loving and positive in her presents. However, protect yourself by spending as little time as possible around the negativity.

If you are a minor, live your life. Get involved in activities that you enjoy. Learn from your mother's situation. It is definitely a life lesson.

In any situation that life gives you, there are two ways of living with it-negatively and positively.

You can see how your mother's negative lifestyle has affected your family. That is a choice! You know that is not the way you want to live your life.

There are also support groups for care givers and/or family members. Call your local Arthritis Foundation for times and places.

Her doctor or hospital may also have information for local support groups. I strongly suggest that you join one.

Valerie please let me know if any of this helps you. If you have more questions, don't hesitate to contact me.

Valerie said...

Thanks so much... I totally get what you saying. I need to change myself and my reaction towards things, because I can't expect her to change.

Mckay K said...

Valerie, you most definitely GOT IT!

If at any time you think I can help, please don't hesitate to contact me. You are never alone.

Be well