Where are all the Men? Rare Disease Edition

In one of our forums recently a man asked if the illness he had was more common in men or if it was just that men were more likely to seek our advice and support. As the mother of two young adult men with complicated health issues, this hit me hard. There are definitely some illnesses that affect females at higher percentages than males, but for most it is not to the degree that we see in forums that offer support, advocacy and education. And again, as a mom of two young adult men with complicated medical conditions, I feel it is something we need to address.

No, I am not saying that men need to flood FaceBook groups with their membership. I am just saying that men should be encouraged to find the support and education that they need to live their lives to the fullest. We need to empower men to educate them to advocate for themselves and support them through diagnoses that are not as straightforward, as medical textbooks would like us to believe.

Many times on these support forums there are wives, female partners, moms, in other words females in the affected man's life who join to support the man in their lives. This is great and can be a huge source of information for some who plays the role of caretaker. What a caretaker cannot do is support the patient in a way being part of a forum of affected patients can. There is no substitute for hearing directly from others who have the same symptoms as you, who have experience the same things as you from doctors, friends and family as you and who feel many of the same feeling you feel. A caretaker being part of the forum can share what they find on the forums, but it is not the same.

Men need to find other men in whatever situations they are most comfortable in that they can best identify with if they have a rare medical condition. Men experience the world in a different way from women. They may have different symptoms than women, different feelings and emotions, different ways they see themselves in the world. There are all different ways to get support, different groups available based on illnesses. It does not have to be a large group - it may be finding one other person with a similar condition that you can connect with, but men need the connection and support in their lives, the same way women do and they need the education provided in these connections in order to advocate for themselves.

Men that are part of these groups, I encourage you to be active in them, as you feel comfortable. Seek out information specifically from men in the group at times. Do not be afraid to let emotions show. Having a rare illness, even if well controlled a majority of the times can cause some deep valleys of emotions and sharing with others can help you not feel as alone in them and help you process them yourself.

If you do not know where to find connections here are some ideas for everyone, regardless of age, sex, illness, etc... Seek out the illness advocacy groups and see what resources they may have available, search online for support groups that you may connect with and that fit what you are looking for, ask your doctor, and you may also ask your doctor if you can leave your information with them to pass onto others who have similar diagnoses.

Women are not the only ones with rare diseases. Women are not the only one who need the support of others coming along side them and sharing their experiences in living with a rare disease. Please, men, for my sons and for other young men, step up and show the rare disease world that you have support voices and that you care for them.