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How many are there in this world who have an autoimmune disease and wonder “am I an alien?” Do you feel like are an alien dropped here from another planet. I am not talking about a mental issue. I am referring to the dreaded autoimmune diseases that plague 50 million Americans who live on this planet just like you and me.
We know so little about autoimmune diseases. They invade your body and kill it off one cell at a time. Autoimmune diseases range from the rarest like Asherson’s syndrome to the most common one such as Graves’ disease and Hashimoto’s thyroiditis.
At this time, we have identified over 80 different types of autoimmune diseases. Who knows how many more there are that scientists have not identified yet?
My Friend-“Am I An Alien?”
I have a very close friend diagnosed with at least five autoimmune diseases. Why so many? Because when you have one, you usually have more. I mean, why would the body only attack one area. Why not kill all of the alien organs at the same time?
The last statement is an example of my dry sense of humor and the very type of humor my friend has. She looks at life differently as I am sure most of you who face the same issues also do.
I have to say my friend is one of the most incredible people I have known. We have been friends since junior high school.
Yesterday I was talking to her on the phone and decided to do a brief interview with her. How does she do it? How can she keep going day in and day out? It has always been beyond my imagination how she can even get out of bed each day.
She is 62 and still gets up to go to work. Imagine how hard that must be. For those of us who do not have an autoimmune disease or medical issues, it is impossible to know what she goes through — especially someone like my friend.
She never or rarely complains, gets up for work, mows the yard, goes out with friends, and makes herself enjoy life. But what we don’t see behind the scenes is what this interview will reveal.
Q: How do you cope with your illness?
A: Some days, I have no feelings or emotions. I have to tuck them away, so they do not overtake me.
I stay in denial because if I face grave issues, I will live in fear.
I focus on the short term goals of life and rarely look into the future. The future may not hold anything for me.
And sometimes I survive from hour to hour because there is so much to deal with it will take over my mind.
Q: How do you keep your sense of humor?
A: It is the only choice I have. I use it as a type of denial and to make light of my horrendous situation. Without my humor, I may have to face the possibility of death, and I am not ready for that yet.
Q: How do you keep from giving up?
A: I stay in denial. I am chronically fatigued and feel a loss for the life I could have had. Giving up is not an option. If I sit down and quit, I will die.
Q: What do your doctors say?
A: Some say I have five autoimmune diseases. Some say I have cancer. Some say I have chronic lung issues from other things. And then some say I am mental and need to get over it.
Q: How do you handle it when a doctor tells you that you are mental?
A: At times, I feel like an alien in this world. And at times I begin to wonder if I am crazy. Then I pick myself back up and realize that the medical symptoms and issues I have are real. I put my mind back into the positive side and remember that if a doctor tells me I have no problems, it is because they are not willing to admit that they do not understand or have the answers.
Q: You have researched so much and have tremendous knowledge about autoimmune diseases. How do your doctors deal with the fact that at times you have more experience than they do about your condition?
A: I have had to learn to talk to doctors like I am dumb. They don’t like me telling them what I know. It makes them feel stupid, and that is a no-no. If I offend a physician, they inevitably say that I have a mental issue and nothing is wrong with me, although I do have a definitive diagnosis of 5 autoimmune diseases. They often treat me like a hypochondriac.
Q: How do you feel about demeaning yourself to make your caregivers feel intelligent?
A: At times, I feel lost and alone. I feel an emptiness inside because no one believes me. But if I don’t do this, many caregivers will not treat me.
Q: How has this affected your life?
A: Even with medical assistance, I am financially devastated. I lose money every time I have to take off work.
I always have to deal with the mental side and ask myself, “have I lost it, or can this be happening to me?” “Am I an alien” because I have an autoimmune disease?
But in the midst of all of these medical issues, I make myself get out of bed and interact socially. I go to work because what I do makes a difference in the lives of others, and it gives me purpose. When I work, I am needed.
My friend takes care of the elderly on a one to one basis. She is one of the best caregivers I know.
When I began this interview, I told my friend that I did not understand how she does it or how she must feel. In the end, I am sad and almost in tears. She hides her pain so well, and no one has any idea what she is going through.
Do you face the same issues she does? Day in and day out do you force yourself to get out of bed and try to function?
Four Most Fatal Autoimmune Diseases
I am going to list the four most dangerous autoimmune diseases because I want more people to become aware of what people face.
1. GRAVES’ DISEASE
A condition affecting the entire thyroid. If left untreated, it can end your life with heart problems and storms of thyroid hormone released into the body.
2. GIANT CELL MYOCARDITIS
GCM is by far the most fatal and affects the heart muscle
3. GRANULOMATOSIS WITH POLYANGIITIS
GMC causes inflammation of the blood vessels and decreased blood flow to the organs. The blood pressure and heart rate can drop dangerously low.
4. ADDISON’S DISEASE
A disease where the body attacks the adrenal glands.
While these are the most fatal and dangerous ones, there are over 80, and scientists are discovering more autoimmune diseases every day.
They Need Us
As you know, by now, I am an ER nurse. I am now retired, but I will always remember my patients.
I have a few words of wisdom to the medical profession and the ones who know a person with these issues.
People with autoimmune diseases do not ask to have these medical conditions. The medical world does not know everything. We know very little about the human body compared to how intricate it is.
A person with many medical issues is looking for an answer. When no one can give them a solution, it does not mean they do not have the disease. They still have pain and fatigue, and they still require medical attention for the symptoms. These people deserve your respect.
They Are Not Aliens
People with autoimmune disease are not aliens. Yes, what they go through day in and day out may cause them to feel like one, but they are not crazy. These people could be your mom, dad, brother, sister, or best friend. Please treat them as you would a person you love.
If you don’t have an answer for them, just tell them, “I don’t know.” Do not put your lack of self-esteem off another to make yourself look and feel better.
On second maybe they are aliens dropped here on accident, or perhaps they are a result of the horrible toxins we are putting into this earth. Regardless of the cause, people with autoimmune diseases are no different than you and me. But for them, it is a struggle to make it through each minute of every day.
I know there are so many who are reading this that need to talk. Please share your story with us. I am here to answer any questions you may have to the best of my knowledge.