Tips on Managing Your Relationships

Part of A Guide to Parenting with MS and How It Affects Your Family

Not many people talk about how hard it is to manage relationships with a disease like Multiple Sclerosis. Here are my best tips for making those days easier when I am feeling defeated. 

Two of the most common symptoms of multiple sclerosis (MS) are memory disruption or problems thinking and fatigue; both can greatly impact a person’s relationships. My daughter and I have been doing ‘life’ mostly alone since before she turned 2. During that time I have realized how important adult relationships are.  With support from the people that love me, we have worked hard to figure out how to manage some of the challenges that MS presents.

It is important for you to be aware of your relationships so that you can make sure that you are taking care of each of them.  It is also important for you to control your relationships and not let them run your life.  When you have a chronic illness like Multiple Sclerosis you need to keep stress down. I have chronic pain and for me, the most important thing is to keep my relationships with friends and family healthy. When relationships become a struggle there is a chance of a pseudo exacerbation.  The last thing that I need is to add more symptoms. 

The term “pseudo exacerbation” is used to describe a pattern of worsening symptoms that commonly occurs when a patient is under stress. This pattern is characterized by the abrupt onset of symptoms, sometimes followed by an equally abrupt remission, within days or weeks. There are other reasons that spur on pseudo exacerbations but that is for another post. 

#1 - Healthy Friendships

The way I see it, there are a few ways to manage friendships when you have MS:

Find ways to keep yourself from getting sick: 1/3 of all relapses are due to infection, so staying healthy will keep your friends from having to do anything special to accommodate you.  Next, embrace the fact that you will get sick, and then find ways to make your friends’ lives easier when you do. What accommodations will you ask for? Shorter drives to meeting places, or being understanding when you need to cancel are both reasonable requests for any good friend. 

I am really self-centered.  I am the kind of person most therapists would tell you to ditch at the soonest opportunity. I have “tons” of problems and there is always a new emergency or issue in my world.  

My best friends know this about me and accept me for who I am.  All of the people closest to me have shared with me something similar to at least one of the following sentiments: 

  • “If you didn’t have bad luck, you’d have no luck.”
  • “It’s always something, no really, you can’t catch a break.” 
  • “I don’t know how you keep a positive attitude. Something is always going horribly wrong.”

The reason that I mention my shortcomings is because I know what they are.  I do my best to be a good friend and all of the people closest to me know that I really am doing my best, but my life is a shit-show and I need to vent about it.  

Healthy friendships understand that you are 'you' even if you have limitations that you didn’t have prior to a relapse. I make sure to communicate the challenges I face so that the people that care about me can at least partially understand why I might be a total lunatic 90% of the time.  I may only have as many friends as I have fingers on one hand but they are solid and can make accommodations to continue the friendship. 

#2 - Find Out How They Are Feeling

I am not always a great friend.  I need to work hard to keep the lines of communication open. I can get so wrapped up in the horror which is my day-to-day that I forget to genuinely ask: How are you? Although I am lucky that my best friends and family are understanding, for the most part, knowing where they stand is important.  I regularly talk to one of my closest friends about the burden I put on him.  I make sure that he knows how much I appreciate all that he does to support me and my daughter. I have another friend that I will dominate every conversation with for a week or more before stopping to sincerely ask how she is doing.  

When you are feeling like your friends or family aren't being particularly understanding or you don’t know where they stand, try latching onto your younger years for a "Truth or Dare" conversation? This could work really well with a spouse, sibling, friend, parent, or child. The point is to take turns and share life stories, experiences, fears, and hopes. 

As a person who loves other people, you need to remember that your chronic illness might be really hard for them too.  It can’t always be about how horrible you feel. 

#3 - Sex and Lack There Of

I was on the verge of divorce long before I had a formal diagnosis.  This means that for the most part, I have avoided this particular issue that often comes with MS.  

Here are some resources on sex and multiple sclerosis in case you are interested:  

Multiple Sclerosis can decrease the desire for sexual activity. Then once you try to get going it can also cause issues with arousal (erectile dysfunction or lack of lubrication for women.) If you get past all those roadblocks then there is another set of issues: some women find intercourse painful, and men can have decreased sensation and difficulty achieving orgasm.  I didn’t know this when my partner and I split up.  

When I tried dating again I found that I wasn’t interested in sex.  As I tried to get past my lack of desire I found sex unbelievably painful and not enjoyable at all.  It wasn’t long before that relationship fizzled out.  I have been happily abstinent ever since.  If I was in a secure long-term relationship I am sure that I could have done something to work on the problem.  As a single mother, the last thing that I have time for right now is an extra person.   

#4 Unhealthy People

As I have mentioned I have had a couple of unhealthy relationships.  I have chosen to either end them or change them.  I decided to reduce the pressure that unhealthy relationships placed on my life because I believe that it would be more healthy for me. When you choose to end a particularly difficult relationship it is usually very taxing and stressful.  Know that if you are ready to change the dynamics of an unhealthy relationship you may end up in an exacerbation.  Remind yourself that you may feel physically worse after making changes to the status quo in a relationship; the person that impacts you negatively may even imply that you are not able to cope without them.  Remind yourself why you made the change, the new stress of breaking off or changing the relationship will dissipate.  Although there is more on my plate because I minimize contact with the negative people in my life I find that on the day to day my symptoms are easier to handle.  

As a good person you may want to believe that with enough work, all relationships can be healthy, because on some level, all people are good deep down. Unfortunately, that isn’t always the case. Oftentimes, limiting or eliminating contact with a person that is stressful for you is much less damaging than having them in your life. Once a person is diagnosed with a chronic illness they really need to assess their lives.  For me, that included assessing the impact some of my relationships were having on my happiness.  

Look at your life and assess if you have toxic people in it.  These are the people that fail to provide emotional, physical, and psychological support for you.  Your goal is to stay healthy for as long as possible and to thrive emotionally. Take special care in evaluating people that are particularly negative or draining.  Relationships that are arduous may need to be reevaluated. Look at what people do and say.  Are they questioning the validity of how you feel? You may also need to reassess relationships with a person not able to, or willing to cope with the mental and physical changes in you. 

I have a couple particularly stressful relationships in my life that I can’t avoid.  With that being said I can control some of the negativity and stress that they cause me.  

I have recently felt how much interaction with people that upset me impacts my physical health.  When I have a negative interaction I spin. I let the stress eat at me if I don’t refocus.  I think about all the ways that I could have dealt with it better and question why these people can’t change. 

In reality, I know that they are who they are and all that I can do is protect myself from harm.  For me that means only answering the phone when I have the bandwidth; venting to other loved ones to get it off my chest; and from time to time I get to lose my cool and that's okay.  

I also know that being calm works better than losing my mind.  It works better for my stress level.  It may not improve relationships, but I am old enough to understand that some people need to be upset. I understand that some people care more about their needs than the needs of others.   I understand that some people will never grasp the difficulty that is my day to day life. 

With that being said, I can remind myself that I am doing the best that I can and that I can not change people that don’t see the errors of their ways no matter how many times I have lost my cool. 

#5 - Share Where You Are. Often.

You don’t want everything in life to be about MS but it is easy to send mixed messages.  You need to share when it is a good day and when it is a bad day.  People, no matter how well they know us, are not mind readers. 

There are going to be good days, great days, bad days and horrible days.  Find a way to clearly express this to those around you.  People that you live with or spend significant amounts of time with may learn some of your ‘tells’ but you shouldn’t rely on the people you love to guess.  I find it unbelievably confusing when my body decides, often abruptly, to go offline. I find it hard to handle the whiplash of feeling ‘my normal’ then all of a sudden notice that my brain is completely fogged up, my legs are unbearably painful and I'm overcome with exhaustion.  If this is hard for me, the person living it, how must it feel to those around me?  

When feeling good, I may want to do things on my own but if I don’t share that I have had a turn it is not fair for me to become resentful when others don’t step up to help when I am not feeling as well. Be clear and direct about what you want because your loved one isn’t a mind reader.

Be cognizant that chronic illness can shift the balance of a relationship.  IF you have young children be aware of your expectations and try to limit the imbalance.  This may mean leaning on other adults to help you with your charges.  You never want a child to feel like a parent.  Keep expectations age appropriate.  I love when my mini helps with cooking and cleaning.  But I am in charge of planning and safety.  

#6 - Watch Your Finances

This should go without saying whether or not you have a chronic illness but it bears mentioning.  I have always been a penny pincher. I know that I plan to work till 67 but what if I can’t? (Update: I will need to work till I am 74, since I just took on a 30-year mortgage, oops!) What if I start getting worse? Will I be prepared? If I worry about these issues the people that depend on your income will also worry about them.  Even if you aren’t working, if there is someone else in your home that is financially providing for you they are most likely worried about finances.  

You may be interested in trying the newest supplements, diets, mobility aids or adaptive devices but be aware of where your budget falls.  

The prefrontal cortex deals with impulse control and prospective memory.  Depending on where your lesions are you may need to be more vigilant about how you spend your money. You may need a backup system to keep an eye on things in case your brain fails.  Having a budget that is written out will help you keep an eye on your expenditures; having a date every 3-6 months in your calendar for you to do a financial check-up is also smart.  

I have a good job and great benefits; but I also have a lot of health care needs.  I make sure that my Flex Spending Account (FSA) is renewed each year to help me with my medical and dental co-pays.  

Know where you stand for retirement.  Most of us will be able to work till a normal retirement age.  Although we have MS our life expectancy isn’t much lower than the general population.  Make sure you are prepared for a long life with more expenses than many retired people.  Check with your employer to make sure that you are taking part in any 401K or 403B plans that they offer.  

In the USA we have two programs if we need to stop working. The SSDI program pays benefits to you if you worked long enough – and recently enough - and paid Social Security taxes on your earnings. The Supplemental Security Income (SSI) program pays benefits to people with disabilities who have limited income and resources.  If you work for an organization with a pension plan make sure you understand your rights in regards to past Social Security contributions and how it will impact you if you become unable to work. 

MS can take a toll on your relationships. Limiting the impact of toxic people and increasing the lines of communication with the people that support you and bring you joy will make your life and relationships more fulfilling. Although you may feel different every day your support network might not be aware of how you are treating those that you care about. Are you finding out how they are feeling? Sharing with them how you are feeling? Make sure that you are putting aside the time to talk about everything from finances to intimacy to daily expectations. Managing your relationship, even though it is a lot of work, can make your life easier.