Disclosing to Friends & Family
I've previously discussed disclosing in a work context, and I think there's still quite a bit to delve into, however today I'd like to focus on disclosure to friends and family.
In many ways, this is a much harder task than disclosing to an employer. Generally, in the latter context you only have to do this once, unless you decide to tell colleagues or change roles. Telling strangers about your MS is a much easier proposition. Telling people close to you can be frightening: in the short moment that you've told someone about your MS, they have formed an opinion, felt several emotions and the fight or flight response may have kicked in. I don't imagine there being any fisticuffs, I don't mean this. It is more that there might be an awkward silence or an uncomfortable air until you're able to reassure and inform them.
Over the years, I've found that it's very difficult for family and friends to really see things to the extent that those that see me every day do let alone relate to what my MS feels like. Even those that see me daily don't see the multiple trips to the bathroom at night, the 'quick' lie-downs that sometimes last hours, the slurred, fatigue-induced thoughts that slip out of my mouth after long days.
Managing relationships with MS can be a tangled web. It is difficult for others to put themselves in the shoes of those going through diagnosis or, indeed, any of the grieving process that comes with coming to terms with a chronic condition. It's difficult to defend ill-informed thoughts when you're not in the room.
There's a certain level of faith in you and trust in what you say that has to exist for people to really accept what goes on. Ahead of one family party, I was told by a family member that my fatigue was "all in your head" - technically, that's true! But I was very hurt at the time. When you explain invisible symptoms, you may as well be asking people to believe in Father Christmas or the tooth fairy - seeing is believing. Some will believe, some will judge. Some will support you and stay; others will wander off over the years.
Remember too, that many who consider themselves as close to you are also going through the grieving process. We often forget about them when we're wrapped up in diagnosis or relapse. If we keep talking, listening without judgment, asking questions, checking in, then we stand a greater chance of getting through all of this together.
If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme
In many ways, this is a much harder task than disclosing to an employer. Generally, in the latter context you only have to do this once, unless you decide to tell colleagues or change roles. Telling strangers about your MS is a much easier proposition. Telling people close to you can be frightening: in the short moment that you've told someone about your MS, they have formed an opinion, felt several emotions and the fight or flight response may have kicked in. I don't imagine there being any fisticuffs, I don't mean this. It is more that there might be an awkward silence or an uncomfortable air until you're able to reassure and inform them.
Over the years, I've found that it's very difficult for family and friends to really see things to the extent that those that see me every day do let alone relate to what my MS feels like. Even those that see me daily don't see the multiple trips to the bathroom at night, the 'quick' lie-downs that sometimes last hours, the slurred, fatigue-induced thoughts that slip out of my mouth after long days.
Managing relationships with MS can be a tangled web. It is difficult for others to put themselves in the shoes of those going through diagnosis or, indeed, any of the grieving process that comes with coming to terms with a chronic condition. It's difficult to defend ill-informed thoughts when you're not in the room.
There's a certain level of faith in you and trust in what you say that has to exist for people to really accept what goes on. Ahead of one family party, I was told by a family member that my fatigue was "all in your head" - technically, that's true! But I was very hurt at the time. When you explain invisible symptoms, you may as well be asking people to believe in Father Christmas or the tooth fairy - seeing is believing. Some will believe, some will judge. Some will support you and stay; others will wander off over the years.
Remember too, that many who consider themselves as close to you are also going through the grieving process. We often forget about them when we're wrapped up in diagnosis or relapse. If we keep talking, listening without judgment, asking questions, checking in, then we stand a greater chance of getting through all of this together.
If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme
