When a person gets MS everyone is aware of the emotional and physical adjustments that he/she has to make. However, any type of chronic illness affects not only those who have the condition but also those who care about them. It affects their significant other (whether married or in an exclusive dating relationship), their children (whether still small or grown with families of their own), their parents and siblings; their friends; the people with whom they work; everyone around them to some degree. Of course, how and how much depends on the relationship, but there is an effect nonetheless.
I can speak to many of those situations. As an employer (I work in Human Resources), I help managers identify ways to help provide reasonable accommodations that would allow employees with chronic conditions to be able to do their jobs. Often times, it requires helping managers and coworkers look at how to accomplish a goal from a different perspective. I also try to help the employee know their rights under the Family Medical Leave Act because people with chronic health conditions often need to miss time from work. This is true also for their immediate family members who might have to assist them with transportation or care. Unfortunately, due to the need to miss work or to have changes to how things are done, the person needing the assistance has to endure a negative atmosphere. Therefore, one of the consequences of being a family member of someone with MS is how you may be perceived at work. “They” may see you as unreliable or taking advantage of them in some way. They only see how your being absent from work affects them. They don’t see the guilt you feel for letting them down or the fear you have that someone might retaliate and you could become jobless or exist in a hostile work environment. As the family member, especially if you are the spouse and your partner is disabled, a job is your lifeline to having a place to live, food to eat, and medical care; so, creating any type of turmoil at work is very scary.
Then, there is the effect on extended family and friends. All plans for special occasions are contingent upon how the family member with MS is doing. For me, I never go out with friends. I never plan a day of shopping. I never get to go to performances at church or attend family reunions or go out with the gang after work. I have a combination of family, friends, and hired assistants to help Lynn while I work. I can make a trip to the grocery store and back as long as I’m not gone more than an hour or slightly longer. As far as participating in anything extra… forget it… I’ve already called in my markers or I need to reserve them for the super important times I need to get away. So, except what I gleam from Facebook or emails, I have no friendships. For family gatherings, if they want us there, the events have to be held at our house. I’m very fortunate that all or family understands that and routinely plans special events at our home so that both of us can attend. Lynn needs a place to rest from the activities, and I need to be close by to help him get intobed, feed him, and cath him as he needs it.
For children, the impact is closer still. Not only do they grieve over the things their parent can no longer do with them (Lynn had to miss his son’s graduation from Graduate School, for example), but they feel guilty often for still wanting to participate in the things their parent no longer can. Lynn’s son is very caring and is really wonderful for helping out and keeping in touch but I know he struggles with balancing what he wants to do and feels he needs to do (though he has never said anything), I’m sure there are times he resents us “expecting” him to help me out at events. I know he probably wants to have “just one” family gathering where he’s not called upon to help care for Lynn while I help out with the other activities occurring. Those feelings are natural but often lead to feelings of guilt. Then there is also the fear of, “Will I get MS, too?” Knowing thesymptoms and learning what may help preventive MS becomes a way of life. There is also that question when they start dating, “do I get married and have kids of my own if I’m likely to have MS or pass it on?” It’s a struggle for them to make the decision to share the possibility with someone they care about and will that person be willing to take on the risk of possibly having a totally disabled spouse, if that should be the outcome? Children have many, many fears, anxious moments, and adjustments to make related to coping with their parent’s MS.
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