Meet Angela from the PatientsLikeMe Team of Advisors

Posted March 9th, 2016 by

Say hello to Angela, another member of your 2015-2016 Team of Advisors. When she was diagnosed with MS in 2010, Angela was writing a book while balancing a busy schedule as a university lecturer and community volunteer.

Angela sat down with us recently to talk about the new challenges of leading the life she wants with MS, and described the isolation that can come with living with an “invisible disease.” Below, she shares why she always keeps a notebook handy and offers some advice to others with chronic conditions: “Turn your focus outward. Look for ways to give back.”

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Biggest obstacle so far? The natural perception we have that if someone looks “normal,” then they must not be ill or incapacitated. Have you ever been critical of someone parking in a handicapped parking space because that person got out of the car, walked into the store, and appeared to be fine? Invisible diseases may require huge amounts of energy just to walk that shorter walk. On the other hand, friends try to encourage me by their comments: “Oh, I forget things all the time!” “I’m fumble-fingered and clumsy, too!” “I can’t come up with words either!” All of these comments are well meaning, but their effect is to negate my difficulties. They don’t understand the isolation that comes to patients with chronic conditions when their symptoms are trivialized.

I am learning to reframe my MS symptoms because I do want folks to gain a better understanding of the disease. “What is normal for you?” I’ll ask. “What are you able to do well all the time without thinking about it?” Since I’ve always been a doer, friends will often say, “You do so much. I’d get tired if I did half as much as you do.” Fine. But if, all of a sudden, you could only do half of what you do now, would you be satisfied that things were fine? Take your daily schedule and cut it in half. Would that be okay with you? Take your productive work, your family time, your household tasks, your leisure time, your shopping, and your time with friends, and cut each time in each area in half. What would you get rid of? What could you happily leave out? Understand that the other half of your time then, would be spent recovering from the activities you want or need to do. Think about it.

I tell these things and at the same time don’t want to be a target of misguided compassion. I don’t want pity. I do want understanding. Don’t we all?

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

MS — I have it. It does not have me. But is that really true? Most of the time, I agree. I am not living as if I’m bound to this disease. We are, however, inextricably intertwined. Those alien t-cells (in MY body, generated by MY body — not so alien after all) are attacking the precious myelin covering the nerve cells, garbling and slowing the messages to my legs, hands, bladder, voice, and eye. A war goes on inside of me — a civil war, sort of brother against brother, if one can personify cells. I can’t count on my memory or my senses to properly orient me in space and time. Friends think that sympathizing by saying they forget things all the time or are also tired a lot will be helpful to me, but its effect is to minimize what I’m going through. But it’s not normal. I have MS.

In MS, the idea of normal takes on different connotations. My normal is tingling, numb feet, checking to see if I really am wearing socks when I’m not, looking through a right eye that always seems to have a bit of Vaseline on it, tingling, clumsy fingers, and wondering how long it will take to go to the bathroom or if I can go at all. These symptoms are the current background noise of my MS. Dropping things, loss of place, brain fog, drunk walking, reading a book to a roomful of 8 year-olds when I sound like I have marbles in my mouth or have had a couple of bottles of wine for breakfast, debilitating leg spasms that come on so quickly and painfully that the neighbors must think another murder is happening when the upstairs windows are open—these are a few, but by no means all, of the additional symptoms of this weird disease.

Cognitive issues also rear their ugly, scary heads. As I stood in line at the local supermarket, the man in front of me said something about going to the next check stand. He looked right at me, but somehow, I thought, he couldn’t be talking to me. And then the checker said I could go into the next line. Me? I glanced over at the next line in befuddlement. Are they really talking to me? I was confused, stuck in a bizarre place not connected to my usual competent social self. Hours passed, it seemed, and then I got it. A new checker had opened the register and was waiting for me as “the next customer, please.” My confusion eased and I recovered, smiled my thanks and went to the next line. This loss of place doesn’t happen often, but often enough that I am on guard for it.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Give yourself time. On the emotional roller coaster you’ll ride in the first year after diagnosis, the highs and lows you experience may be overwhelming. Don’t deny them. And then take a breath and continue to breathe. Get on with your life. For me, the relief of finally knowing that all the strange symptoms I experienced were MS and not lupus or a brain tumor was huge. Realizations about how your life will change can come slowly or hit you in the face. At each realization, take another breath and start building a team of those you can count on.

Be grateful. In the end, life’s not all about you. Sitting in a pity party for very long, focused only on yourself is no place to stay. Turn your focus outward. Look for ways to give back. Each day I’m alive, I remind myself to thank God. He’s my rock.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

Living with any chronic disease uses up energy, energy best spent living and not managing the doctors, pharmacies, and all the medical issues you face. I learned early that no one has my best interest at heart except me. Convincing other medical personnel to be mindful of me as the reason they even have jobs takes time and patience.

Advocating for yourself? Here’s what I’ve learned. Keep track of doctor’s appointments and interactions with any medical entity in a separate notebook, with dates, times, names of anyone you speak with, key concerns, and results. Understand that this isn’t a battle with the people on the phone, it’s a battle to get the best outcome for you. The people on the phone are a resource. You want them on your side. Use their names. Be courteous. Ask questions. Be careful to listen and follow the steps they outline. Ask more questions. Use internet information directly if they ask for research and medical reasons. Never use convenience as a reason for any appeal.

Many times I’ve wondered why I bothered with that darned notebook, but the results have been worth it. I successfully appealed a denial of coverage for a medication beneficial to me and in another case, I was able to save hundreds of dollars in co-pay billing because I could track through that notebook the conversations I’d had over the span of a year. It may seem like a chore, but your well-being is worth it. If you are physically unable to keep a notebook, have your caregiver do it for you.

 

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One Comment

  1. Thank you for words of wisdom. After a recent blood test and finding my ANA count is high I’m off to yet another Dr Visit. I’ve started to write down everything. I’m blessed to have a tablet to keep notes.

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