Loneliness & MS

The arrival of the holiday season can often bring feelings of isolation and loneliness. However, isolation and loneliness can also accompany a diagnosis of MS any time of year.

The funny thing about loneliness is how very little it has to do with actually being alone. Loneliness describes an emotional response to one's circumstances. It is a state of feeling disconnected.

Adding to this is the varied nature of MS. Each person experiences it differently, which makes it difficult for one to completely understand another’s experiences. I think one of the core causes of loneliness is feeling different from everyone else.

I work from home so I am alone a lot. I often enjoy my alone time – I read what I want to read, listen to what I want to listen to, and watch what I want to watch. But I also get lonely. Especially when my MS gets in the way of a normal day or when I am reminded of my “otherness.” My disability separates me from the group. I have to work, if not harder at least differently, to get through the day. My thoughts drift to my disease and disability throughout the day. This reinforces my feelings of “otherness” and thus loneliness.

While it’s helpful to recognize these feelings for what they are, I don’t think it’s helpful to dwell on them. Unfortunately, you have to be proactive and seek out a community whether it is in person or online to lessen your sense of otherness. Finding a community of individuals with shared interests and experiences has been helpful to me.

HELP Wanted?

I had to ask a stranger for help the other day. Not to just open or hold a door for me but to readjust me. A bit more intimate. It was 12:45 pm. I was in our building’s courtyard. My foot had slipped off the footplate of my wheelchair. I had tried swinging it up myself to no avail. I knew it was 12:45 because I looked at the time to see how long it would be until Adam would be home (at least 4 ½ hours). I knew I couldn’t wait. My leg had already started to ache. I made up my mind. Rachel, you need to ask someone for help. I knew I needed someone who was strong enough to lift my leg and preferably spoke English. Finally, an acquaintance walked out with his dog. I asked him to put my foot back. He looked, lifted, no big deal. I thanked him profusely. Done.

It was harder on me than it should have been. It took strength to admit I needed help. I have to accept I can’t do everything on my own anymore. Asking for help does not admit  weakness. With multiple sclerosis, constant adjustments need to be made, the most difficult of which aren't always changes in physical routines, but revisions in attitude. When you have MS there are times when you need to put your health and comfort above your pride.

Living Without a Cure

You often hear about cancer survivors; those who have beat cancer. But there is no beating a chronic illness. We live with multiple sclerosis; it does not go away and it can’t be cured. As Congressman Morris Udall said about Parkinson's disease, "I won't die from it, but I will die with it."

How do we live knowing there isn’t a cure? We live day by day. MS requires maintenance. We have to be regimented to make sure we get adequate rest, avoid triggers, take medications on time, and do what we can to avoid exacerbations. It is also important for us to just feel “normal” and go out and stay up late, even if we may pay for it later.

Knowing there isn’t cure doesn’t mean we live without hope. We do, however, have to combine a hopeful outlook with a realistic outlook.

So-called fixes are everywhere. If you do this and stop doing that, follow this, buy this book, etc. you’ll reverse MS. These ‘cures’ are often condescending and essentially blame us for making ourselves sick. Do not fall for false hope.

I think I’m a pretty smart person. I understand my circumstance is out of my control. No amount of kale can make me well again. And because there is no known cure, the best I can do is work with my healthcare team to manage disease activity, ease exacerbations and perhaps slow progression.

The progress, severity and specific symptoms of MS in any one person can’t be predicted, but advances in research and new treatments are perhaps moving us closer to a world without MS. We hope to prevail in the end. So be encouraged, despite the hard challenges that lie ahead.

Chronic Illness Is My Other Job

Between the physical and emotional symptoms, constant doctor appointments and numerous tests and procedures (not to mention keeping track of it all), being chronically ill can become a job in itself. We may find ourselves needing to cut back on hours or stop working altogether due to the demands of our conditions.

As if having a chronic illness wasn’t enough, the burden we face in managing the health care system itself is massive. We navigate through a maze of doctors, administrators, insurers, and pharmacies. We act as go-betweens because none of these people want to talk to each other either.

Many hours not spent at actual medical appointments or testing are usually devoted to requesting and tracking down information, referrals, prescription refills, test results and what they mean, and soliciting follow-up medical advice from providers. I am often expected to be the conduit between my providers and my insurance company, instead of them communicating directly to each other. Thankfully, my husband takes on most of these calls. He is better at maintaining his composure at the frustration than I am.

The health care system uses up a precious resource: our time; the time it takes to check the status of the prescription, to wait for a doctor, to take time away from work, to sit on hold and hope that this one can finally answer your question. We do have lives outside our doctors’ offices.

The system is inefficient and that leads to a lot of wasted time. Establishing a more efficient system that fosters open communication and transparency in the network involved in patient care will create a more positive outcome for everyone involved and a better outlook for patients, who can instead focus on their healing and health.

We fight daily to be able to understand our bodies and to do things others take for granted. Why do we have to fight 'the system' too?

"You look tired.” Or Fatigue Part 2

Fatigue is such a misunderstood symptom of that that I thought it deserved a second write-up. (See the first one here.) Unfortunately, it is understandably difficult for others to comprehend how fatigue affects you daily as a person with MS.

Fatigue is a common symptom in chronic illness and in many cases it is severe and often debilitating. It can be triggered by daily activities or by events that are more elaborate. Those of us with chronic illness will often have to “pay a price” for engaging in an activity and then require a period of recovery. Once fatigue kicks in, there is no other option than to rest. The body “hits a wall” and cannot go further, no matter what.

Exhaustion. It can overpower you even as you wake up in the morning. The thing is that after a while we begin to hide this exhaustion. We learn to smile through the pain, but faking it does not make it. This feeling haunts you. A lot of us pour an incredible amount of energy into living each day.

Fatigue management involves pacing yourself and using what energy you have for the most important things. It may involve asking others to help or just accepting that not everything will be done. 

It is not our fault that we have to leave the party early to make sure we don’t fall asleep at work (if we can still work!) the next day. It is not our fault that we are tired beyond imagination because in life there are some things we just cannot control. Sometimes MS just controls us.

Living With Fatigue –A publication by the MS Trust

Ableism

Nearly 1 in 5 people in the United States has a disability, yet many forms of discrimination against the disability community persist because they are not yet widely recognized.

Ableism refers to "discrimination in favor of able-bodied people" according to the Oxford English Dictionary. Inherent in ableism is the belief that people with disabilities cannot function as full members of society and that having a disability is a defect rather than a difference.

Examples of ableism are readily available in the built environment, where concerns about accessibility are often not foremost in the design process. Instead of fully accessible and welcoming spaces, accommodations are tacked on haphazardly, leading to hard-to-navigate spaces. With the passage of ADA, progress has been made but inclusive design is still the exception, not the norm.

Disability segregation—limiting the movement of disabled persons in public spaces—is commonplace and accepted. Many times, we have to use sketchy side or back entrances, dark and cluttered hallways, or poorly functioning and inaccessible elevators to enter and move about establishments. There’s often no signage so we have to announce our disability and needs. Disability comes with its own unique challenges and trials, but the inability to move freely through our communities, easily get to work, visit friends’ and relatives’ homes — and the social isolation that follows — is a violation of our rights and a detriment to our health.

Able-bodied individuals fail to recognize the privilege of having ready access to any space. Plenty of people may not directly discriminate against people with disabilities but if you use handicapped parking spaces or bathroom stalls you are effectively doing so by taking options away from people who lack alternatives.

Inclusion is the answer. It means that spaces, opportunities, and things are accessible, functional, and welcoming for the able-bodied as well as those with disabilities. An inclusive society removes the barriers and isolation that people with disabilities face every day.

9 Things That Might Not Seem Ableist But Actually Are

Interacting with People with Disabilities

It's no secret a lot of people in the world aren't comfortable around people with disabilities. It can take time getting comfortable with the idea of being disabled, and it can take even longer for people to get comfortable around us. Some people look at us with curiosity, pushing it as far as pointing fingers. Some offer to pray for us (why?) or avoid us, because who knows, maybe it’s contagious? Not many able-bodied people seem to treat their peers with disabilities as, well – “normal people.” Maybe it’s because they don’t know just how similar we actually are? 

Recently, I was on the BART (a Bay Area Rapid Transit train) and a woman said to me, “What happened to you? The wheelchair…” Seriously, lady?!? I’ve got a minute; why don’t you tell me your life story? I told her it was none of her business but thanked her for her concern. Earlier that day, I entered a shop but couldn’t fit through an aisle. The clerk told me to be careful. I turned to leave instead. You just lost a customer. She said she’d be happy to get anything I wanted to see. She should have led with that. I told her I was leaving. My husband told me that she looked panicked when I came in. Another time, a few years ago, I was in a bar and was still using my forearm crutches when a girl came up to me and told me she just knew I was going to be alright. Um, thanks?

People with disabilities as a whole don't like being referred to as "inspirational," especially when they do a basic task like go and buy some coffee. And this happens all the time. While some people get inspired by us simply living our lives and can't help it, please try to refrain from sharing your thoughts with us. We are just trying to live our lives like everyone else. Your comment will have the negative effect, reminding us how different people still think we are.

On the other hand, it is extremely common for people to talk to the person I am with rather than talking to me. “Hello… I’m down here!” Some may argue that this is due to people not knowing how to respond to someone in a wheelchair, or being worried they would say the wrong thing and offend me. I am completely capable of talking and communicating with you — just talk to me like you would talk to any other person.

Oh, and always ask before giving assistance. Just because a person has a disability, they don't necessarily need or want your assistance. Never help someone without first asking them. Also, avoid showing pity or being patronizing. People with disabilities aren't victims. 

When in doubt, always refer to the Golden Rule - treat others as you'd like to be treated. Mutual respect. At the end of the day, this is the only tip you need. Interacting with people with disabilities is only as hard as you make it.

Disability Etiquette from The United Spinal Association