"This article gave me the idea to “interview” my hubbers. He is fantastic, but we don’t talk about my MS much, and I really don’t know how it has affected him." - Karen
Last week’s interview stirred up many comments and responses like the one above. I’d like to share a few of them with you today and take time to explore the themes presented a bit. I’d also like to ask Rob a few more questions because too often I think that we don’t ask those around us how our health is affecting our relationship or how it affects them singularly.
Rob, how has my MS affected you personally? Have my changing abilities altered the way you feel about our relationship over time?
Well that’s a rather difficult question to answer. First, from a day-to-day perspective, I don’t often sense that your MS is having a discernible impact on you. The two symptoms I am most often aware of are fatigue and spasticity. Other than that, I’m often not aware that you are having any sort of physical problems unless you mention it to me.
So, I guess what I’m trying to say is that to a large extent, I don’t feel as though your MS has changed our relationship much because I have not really noticed a lot of change in how it affects you other than what I am already familiar with. I do feel concern about the possibility of the disease impacting your quality of life in the future, but I am very much a day-to-day person, which means I try to not to dwell on that issue much. Is this a good approach to handling the issue? Maybe or maybe not, but it’s just kind of the way I operate. In addition, as I mentioned before in the previous interview, I do try to keep faith that MS research will continue to help us find ways to combat the disease.
"Having a partner, spouse, boy/girlfriend who understands and is supportive and helpful is such a plus." - Maris
That is so true Maris. Although Rob and I are very different in some ways, we are similar in others. One thing that the person who introduced us told me was that he was very much into sports. She emphasized that strongly and downplayed Rob’s experience playing cello through college.
I’m not so much into sports myself, but at least I do know the rules in football and have attended three college bowl games in my time. (My brother will ashamedly mention, and tease, that I once admitted to carrying small books within my band uniform sleeves to the football games on occasion. Hey, I liked to read, and I’ll never live that down.)
Although that introductory person was correct, I don’t think that Rob is any more interested in sports than the next guy. I have learned, however, that to cheer for the Dallas Cowboys is sacrilege here in Washington Redskins territory. LOL.
Rob, you go on an annual hiking trip with a group of friends at the end of summer. I believe that the longest hike you took one year was 70 miles, something I can hardly fathom. Do you ever wish that I were able to walk or hike even a fraction of that with you?
Sometimes yes, but sometimes I feel like maybe it’s best that you are not there. The hiking trips, while enjoyable, are often one long exercise in misery management so I think that perhaps its a little easier for me if I can stay focused on managing just my misery. Coping with my aches and pains and having to think about another person’s might get to be a bit too much, heh.
I should mention that you and I have gone on several little single-day hikes that are certainly representative of what I do on the backpacking trips. We’ve hiked a good two or three miles at Great Falls, VA and just recently did quite a bit of walking/hiking on our vacation to Alaska. We did quite a bit of walking (certainly a mile+) in downtown Seattle, about two miles on a very nice trail at Mt. Rainier and a similar distance at the Mendenhall Glacier in Alaska.
Another interest which we have differently is one related to games and get-togethers. You have a regular weekly game, sometimes two, and I choose to stay home. How do you feel about maintaining separate interests and schedules? Do you ever wish that I would join the game?
I do sometimes wish you could join me for some of the various games I like to play, particularly because there are some couples who enjoy playing together. However, I realize that you probably don’t have the interest level in this hobby like I do and I respect that. I think it’s important that people in a relationship understand and respect the fact that they will likely have numerous interests that the other does not share. And I think most people would agree that being able to do some things apart from your spouse/other is a healthy aspect of any relationship.
[Note from Lisa: After reading Rob’s response, we had a conversation. I admit that I’m completely ignorant of how to play the types of games he likes to play and I should try them out. Who knows? I may actually really enjoy them. Oh, but Rob did teach me how to play specific poker games like Texas Hold 'Em and I’ve gotten really good at those, even outplaying him sometimes.]
More differences. Rob loves the summer heat and I can hardly stand it now. I have trouble when the environment gets loud which doesn’t bother him. How in the world do we ever find things to do together? (That’s a rhetorical question; no need to answer.)
In a previous comment, Suz was explaining a challenge in her relationship, one related to changing interests and physical abilities. Like her, I do not like loud environments and often prefer to stay home where it is calm and quiet. But in doing so, I miss out on social gatherings sometimes. When I do go with the gang, the phrase which is very helpful to hear is, “We can go anytime you’re ready.” That’s nice.
"Those who are our primary friends/family/caregivers are the unsung heroes on this journey. Of course it is not easy for them or the MSer. Given the odds against relationships surviving the fires of MS, I salute those who can fashion a meaningful life together despite the MS." - Judy
Being a caregiver or needing a caregiver is something which isn’t talked about nearly enough. In fact, my friend Patrick, who is a long-time caregiver to his wife who has MS, shared an interesting comment with me:
"One of the most frequent emails I get is from people wondering whether their spouse or significant other has what it takes to be a caregiver in the long run of MS or the other side of the coin from beginning caregivers wondering if they can make the long run. There is a lot of unspoken language out there." - Patrick, Caregivingly Yours
Rob, in recent years, your mother has needed help at home and you have become her part-time caregiver. She relies upon you. Have you given thought to the possibility of becoming my caregiver someday?
I have and it is somewhat daunting to me. However, I think my hiking trip experience serves a basis for a caregiving approach. That is, to take the process one-step-at-a-time. I think using this sort of graduated process would be the right sort of approach for handling whatever MS might require of us down the pike.
Below is a final comment I received on Twitter. This is an important topic which I hope that we can continue to discuss more often and in greater depth. Relationships I mean.
"What a wonderful and supportive boyfriend. Very inspirational to those worried about relationships and MS." - Fiona
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.