Multiple Sclerosis: It's a Family Affair

When you have multiple sclerosis, you don’t have it alone.

You may be the one with MS and the physical symptoms that go along with it, but you can’t build a fence around yourself in order to protect those around you. Like it or not, MS spreads its tentacles out and affects the lives of your loved ones.

Besides being a person with MS, you may be a sibling, a spouse, a parent, a friend, a co-worker. You count on others and they count on you.

Depending on how MS has manifested itself in your life, it will touch everyone around you in small ways, and in profoundly significant ways, both emotionally and financially.

Emotionally: We’ve all had to do it at one time or another. Watching a loved one struggle with health is not a pleasant experience. Relationships between husband and wife or parent and child are disrupted — not that it’s an entirely negative thing, but change isn’t always quick and it isn’t always easy. In the case of MS in the family, close relationships may forever be in a state of flux.

A spouse who becomes a caregiver may feel overwhelmed by responsibility and fearful about the future. It’s a perfectly normal response. Open and honest discussion is necessary to avoid the pitfalls of an ever-changing relationship.

A child whose parent has a chronic illness may have trouble expressing the fear and doubt that accompany it. Worry about the parent, as well as concern for their own fate, may not be apparent. Discussion should be initiated by the parent(s) and questions addressed directly and honestly.

Friends and co-workers will have their own questions about changes in your health. Some of them will find the topic uncomfortable and may avoid any mention of it. If your MS is not a factor in their lives — particularly on the job — you owe no explanations. However, if it will impact the relationship, you needn’t wait to be asked a question — it’s okay to broach the subject yourself and say what needs to be said. It is the unspoken question that has the power to come between you.

Financially: MS can be an expensive disease. The issue of health insurance, if you don’t have a good group policy, is a major obstacle for many people with MS. Individual insurance policies with a pre-existing condition are difficult to come by and are very costly.

Aside from the obvious expense of health insurance and out-of-pocket costs associated with medical care, some MS patients find they have to purchase additional items to maintain quality of life. These may include mobility aids and other assistive devices, home renovations, vehicle alterations, etc.

If you can no longer function on the job, the switch from full-time employment to part-time work — or unemployment — can have a dramatic impact on the household. In some cases, family members who take on the role of caregiver, with its associated restrictions, also experience a decline in income.

No one in the family is immune to the emotional and financial impact of a chronic illness. Those of us who have loved ones to lean are the fortunate ones.

How has MS impacted your family? Please share your stories in the comment section below.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.

Disclaimer: The views expressed above are solely those of the author and may not reflect those of
Care2, Inc., its employees or advertisers.

Karen A.

6:03PM PDT on Oct 4, 2009

Oops, I made a typo on that web site. It is www.takingcontrolofmultiplesclerosis.org . Sorry

send a green star

6:00PM PDT on Oct 4, 2009

I hope everyone on her reads about the "Swank MS Diet" developed by a professor of medicine and visits the great web site done by another professor of medicine on MS: www.takingcontrolofmultiplescleris.org .

When I behave myself life style wise, I do not have relapses and haven't had one in 11 years. I hope everyone reads about what Professor Swank and Jelinek recommends for diet and life style for those with MS. I think you will be surprised at how well you will feel when you follow them. I am almost 60, have had MS for years and still have no visible symptoms. The same is true for everyone I know who follows the more modern and scientific approach to managing MS as recommended by Swank and Jelinek.

Leslie B.

12:47PM PDT on Aug 19, 2009

I am guilty of hiding as much of this dis-ease as possible. My partner has been by my side every step & fall of the way for 14 years. But, I keep things from her.
When we go to visit my family I take extra meds to do everything I can to appear "normal".
Once, after I was newly dx'd we were visiting my family- we'd gone out to eat, and I was seated next to my brother. The tremours started- my tremours tend to be more like a Parkinson's patient big swing jerking moves. He looked at me and said "Stop It!". I told him I couldn't..he said he thought I could. I sat on my hand the rest of the meal- which I couldn't finish.
It hurts the ones I love to see me hurting. So I hide it as best I can.

Amy G.

8:25AM PDT on Aug 19, 2009

I have had MS For 21 years, diagnosed at 20 years old in 1988. Since that time I've married a wonderful man, and we have a now 8 year old magnificent daugther. I've always said that when dating with MS, only the right person - one who can deal with the uncertainty of life- passes a litmus test anyone entering a marriage should. With his support I've received a master's degree, and have worked full time until very recently when dizziness began to make moving difficult.

I live everyday with many tough symptoms- most of which I never expected I would be able to handle when I was diagnosed in the late 80s. That said, my husband, daughter and my "original" family are all very supportive- physically and emotionally. At times they are scared for me, as I've grown with this disease, I have shown them that I can handle the punches that it throws, with a positive attitude.

I've also witnessed that my daughter has grown immeasurably by watching me cope with MS. She sees the difficulties I work hard to live with every day. We speak about it all the time, and while I soothe her fears about her own health future, I show her that life can be lived to the fullest no matter he hurdles thrown in one's path. That is a message that will serve her well in the long run- whatever her life will be.

Please join me on my blog: mslol.wordpress.com where I discuss what I have learned living with MS for 21+ years.
We have different experiences with MS and by sharing them we can all grow. ~Am

7:05AM PDT on Aug 19, 2009

MS is an autoimmune disease, just like Lupus. So far, even though I have some symptoms of MS, my diagnosis is Lupus. But, being a chronic illness like like MS, it also has a dramatically difficult ever changing life for not just myself, but my spouse, Mom, Family, Kids and friends. From the things I can and cannot do, to all of the flares, blood work, doctors, tests, medications, and expense... plus the emotional toll it takes on myself and everyone, it is so difficult to remain hopeful and have faith. As for me, at the moment, I am suffering from something that even a hematologist has not been able to figure out. That is the other scary thing, much is NOT known about these autoimmune illnesses. I just hope that research finds out much more in the near future, to provide more help, medications and possibly a cure for these chronic, life altering illnesses.

Lana T.

9:56PM PDT on Aug 18, 2009

I have just turned 40. Diagnosed 10 years ago with relapsing/remitting. Now is Secondary Progressive.

I guess I could say that my MS has impacted on my family, as in they don't care.
My younger sister has MS as well (rather mild compared to me), but she has turned her back on myself and my mother (who suffers from Lupus and Sjogrens). My older sister has also turned her back on us. Maybe they're frightened either Mum or I might become a problem.
My Father is like an ostrich, never asks if I need anything. My so-called best friend has eradicted me from her life.

So, life is great having MS.

Thank God I have met a wonderful man who loves me and wants to help me. I'm sure he was sent to me.

Martha L.

7:56PM PDT on Aug 18, 2009

My 74 year old husband just rode 190 km in the MS Grand Bend London Bike ride, personally raising $4300, to add into the $980,000 raised in just that one weekend ! Participants know their efforts bring in results, with excellent guests showing/telling them how research has made their life easier in dealing with this miserable disease. "Together, we can find a cure."

Keryn M.

6:10PM PDT on Aug 18, 2009

hello everyone, im Keryn from Australia.
a big thank you for this post and to all of you for yr input. ive been suffering for over 15 yrs progressively and wrongly diagnosed. just recently having an MRI (which costs an arm and a leg over here) i have lesions affecting my left eye and left side of my face. eye specialist says its surely MS i am now awaiting my appointment with a neuro. i travel to see him on 11th Sept. thats the earliest i can see a neuro. i have had many times when i could barely walk. been on prednisalone daily for the last 12mths its the only thing that helps. have suffered from migraines since age of 10 severity got worse over last 2 yrs and now experiance all different headaches. strange but not nice and very worrying. vertigo is fun, lucky the walls havent got holes in them from falling to the left and bumping into things.
i appreciate reading from all of you and tks.
cheers Keryn

Sarah R.

2:27PM PDT on Aug 18, 2009

i am grateful for the posting of this article. my mom has had chronic progressive MS since i was born (24 years ago), so i have never known what it's like to have an able-bodied mom. my parents were divorced when i was 12, leaving her alone to raise me and my younger sister, and in effect leaving she and i to take care of her when she needs it. i feel incredibly lost when her condition worsens or when she experiences depression and loneliness (which is much of the time). i am living in another state, trying to live my life (which is what she wants), just wondering when the ticking time bomb will go off and she will need round-the-clock care. i have called the MS society for their advice about this situation (having a mom living alone with MS), but their advice has unfortunately been unhelpful. i just feel like there have to be other people out there in my and my sister's position---and i wonder what they do/have done. my mom is in one way very fortunate, as she is a doctor, and took out 2 disability insurance policies when the first signs of MS came on. she now has a decent income that has allowed her to outfit her home with the amenities she needs and hire people to help her with cleaning. we are so fortunate in this respect, and i can't even imagine the alternative, though i know that is what most people with MS must endure. this is yet another failing of our health care system-it not only lets the MS victim down, but sends a destructive ripple effect through their family.

Karen C.

12:13PM PDT on Aug 18, 2009

My first husband, the Jewish son of two Jewish Austrian immigrants whose families were fleeing the Holocaust, got an MS diagnosis to cover his medical care costs. He actually was badly hurt from psychiatric medications. But we got involved with the MS Society and the MS Association anyway. Now I have ghostwritten and am pitching a book, which is set to become a movie in 2011, based on a Jewish man with MS's father's life story of how he survived the Holocaust. So I have been involved with Jews with MS to some extent. The movie/book is called Simon Says and tells about how the father of David (the second Jewish man with MS, who actually has it this time, not just a diagnosis) survived ten different internment camps during the Holocaust. www.rainbowritng.com