Sometimes my clients, readers, friends, and even family “forget” that I have Multiple Sclerosis. I intentionally focus on how much I’ve recovered, and the things I do to minimize symptoms. I rarely talk about, or focus on, the symptoms that I experience. But, I do experience symptoms sometimes.
Most times my MS symptoms are a result of an immune response to something I’ve eaten. If I’m honest with myself I can usually find some food item eaten in the previous two days that I knew at the time I should not eat. Other times the MS symptoms I experience are a result of my seasonal allergies, my cat allergies, some other allergy, or poorly managed stress.
Once, our old church held a Sunday school teacher’s meeting in one of the buildings adjoining the kids’ wing. After we were there for an hour I started stuttering, and was unable to keep my balance. I was unable to walk at all, and couldn’t even stand without balance assistance. It was so bad that I gave one of the other Sunday school teachers the keys to our van, and asked him to drive over and get my husband from work because I was unable to drive. The incident only lasted about 12 hours. Several months later, while laying some Internet wires, someone found that the crawl space above the room where we held that meeting was infested with mold. I happen to be allergic to mold.
This week it’s cheese. To be specific, a white cheese with cranberries, and Jarslesburg Cheese are the most probable causes of the intense fatigue, water retention (swelling), brain fog, and slightly increased heart rate I’ve been experiencing since last Saturday.
Why am I sharing this? I’ve noticed a tendency in people to blame their disorder when they don’t feel well, or otherwise struggle with health related issues. I’m guilty of doing it myself sometimes. In fact I just had a conversation with my husband that went like this:
ME: It’s been an MS week. I’ve been super fatigued and mildly brain fogged since Saturday. It’s getting on my nerves. MS sucks.
HIM: It’s been a really long time since you’ve had those issues.What have you eaten?
ME: Right…….. We went to Costco last Friday and I’ve been snacking on that really good cheese the kids picked out. But.. it might not be the cheese. Could be “just MS.”
HIM: When’s the last time you ate cheese?
ME: About two months ago.. remember? I realized it was causing me to swell and put on water weight so I switched to goat milk cheese. Darn it. I haven’t had any problems with fatigue at all in the last two months, have I?
HIM: Nope.
Now, granted my symptoms this week *could* be caused by something else, including the sudden change in the weather. A neurologist will tell me that MS symptoms just happen. That’s the nature of MS – the immune system just freaks out and attacks the neurological system for no reason. That’s why it’s called an immune system disorder. (In fact, *several* neurologists have told me exactly that)
However, experience with my MS and my body have proven to me that there is *always* a cause. There’s always something I could have done to prevent the symptoms. Sometimes I intentionally choose to eat things or do things that I know are likely to cause symptoms. When my 11 yr old daughter makes cheesecake I eat it, even though I know the sugar is likely to cause mild symptoms. When one of the kids at chess brings me a cookie that he baked, I eat it. And when my husband wants to go out to dinner, I usually go, even though going out to dinner is a crap shoot.
Which reminds me — we went out to dinner last Saturday while the kids were attending a birthday party. We didn’t go to one of our tested and “safe” restaurants. We went to a chain restaurant because it was only a few miles from the kids’ party.
Another potential cause of this week’s symptoms.
Autoimmune symptoms happen because *something* triggers the immune system and it overreacts. It’s easy to blame the illness for symptoms. It’s easy for me to say, “I have Secondary Progressive Multiple Sclerosis. There is nothing I can do about MS symptoms.”
Blaming the illness gives patients a way out; a way to not be responsible for the difficulties they are facing. But something happens when you blame the illness — you become a VICTIM of that illness.
And being a victim leads to a feeling of helplessness. If you are a victim, then something was done to you, forcefully and against your will.
You hear the phrase “don’t blame the victim” a lot. In the media people are accused of “victim blaming.” And I agree wholeheartedly — you should NEVER blame the victim. But, let’s be absolutely clear about what makes a victim. If someone is raped, beaten, murdered, molested, etc… she or he is a victim. If someone breaks into your home and steals your valuables, you are a victim. It was done TO you by an outside force.
But when it comes to health that word should almost never be used. The only exceptions I can think of are babies born with drug addiction, babies born with severe disabilities, and children abused by their parents. In these cases, the children are truly victims–they did nothing to contribute to their situation, yet they will deal with it for the rest of their lives.
But when we’re talking about the average person and their health conditions, there are no victims.
It’s become the custom of the U.S. media to refer to a person who has an illness as a victim of that disease. “He’s a heart attack victim.” A few weeks ago, a local newspaper described a woman arrested for hit and run as a “victim of addiction.” No. She is not a “victim.” Yes she has a medical problem that we call addiction. But to describe her as a victim says that she had no part in creating the situation, and she is powerless to change it– and those things are not true. The person with heart disease is not a victim. There are things he can do to improve his health.
I have SPMS. I have asthma. I had metabolic syndrome. I am NOT a victim of these illness. My husband has a friend who has had multiple heart attacks. He struggles with his health, but he is not a “victim” of heart disease. He is a man who has heart disease.
I believe that “victim mentality” has infiltrated every aspect of our society, and it’s hurting our health and wellness. When a person learns they have an illness, oftentimes they don’t think, “Okay.. doctors say THIS thing is wrong with my body, how can I fix it?”
Most of the time they think, “Doctors say this thing is wrong with my body, I guess I’ll have to take medicine and deal with this thing for the rest of my life.” The patient feels disempowered to make any real changes in their health.
Doctors often feed this disempowerment, whether they realize it or not. When I was finally diagnosed with Secondary Progressive Multiple Sclerosis my medical team didn’t give me suggestions as to how I could improve my health. They offered me powerful, dangerous and addictive drugs. They told my husband and I there was nothing they could do. They said I’d never get better. I was told that I’d never be able to walk on my own again, that I should stop fighting it, and get used to being taken care of. My neurologist told me that in 6 months time I would be total care, and a burden to my husband and children. He suggested that I shop for a nursing home now, so that in 6 or 7 months when I needed total care my husband would know which facility to send me to.
I was told to give up, and become a victim of this condition that was causing my neurological system to go haywire.
I went home from that appointment, and very specifically refused to be a victim to illness. I refused to hand my personal power and responsibility over to the illness or the doctors. I took full responsibility for my condition. I decided that if I was going to be around to raise my 6 kids, then it was my responsibility to do the research and learn everything I could about what was happening in my body. It was my responsibility to find my own solution.
For every medical condition I can think of, there are things the person can do to improve their situation. It’s not always easy. In my case, it’s been damned difficult. But 11 years later friends and family often forget I have MS, and strangers never know, unless I tell them.
If I had done as the doctors suggested, and allowed myself to be a “victim” of Multiple Sclerosis my children would very likely not have their mother.
Thinking of yourself as a “victim” of an illness causes the person to feel like they have no responsibility for creating the illness, and no responsibility in recovering from the illness. If you’re a victim of an illness, you can let doctors decide what’s best for you, and believe that by simply following your doctor’s advice you are doing all you can.
But, in most cases that’s not true. The person with the illness can do their own research. They can learn what triggered the illness, and they can learn what activities, foods, herbs, treatments, and remedies might help their body heal.
I am the ONLY person on this planet who is responsible for my health and well being. I refuse to allow MS to take control of my life. I refuse to be a victim of any illness.
When I experience symptoms, I examine what I’ve done and eaten recently that may have triggered those symptoms. That allows me to choose my future actions with better understanding of how those actions will effect my ability to function, care for my children, run my business, hike, attend band practice, and all the other things I do each week.
When I work with clients, I encourage them to take a long, honest and hard look at their diet, nutritional status, living arrangements, life stress, along with potential DNA information. I also encourage them to learn as much as they possibly can about their medical and mental conditions.
When it comes to health, education is the beginning of empowerment. The more you know and understand what is going on with your body, the better able you are to play detective and figure out what you can do to improve your situation. After education, the second most important thing is to continuously evaluate and reevaluate your actions, activities, diet, lifestyle, etc and compare how you feel today with how you felt yesterday. This allows you to start to figure out what is helping you and what’s not.
We must stop being a nation of victims, and the best place to take full responsibility is in our individual health.
