The time is overdue to delve into the mystery of why a man’s identity is so closely connected to what he does for a living…especially a disabled man.

Men scrambled out of the woodwork when I announced to my transverse myelitis support group that I was conducting interviews with male members only, those willing to share how their diagnosis and disability had affected their identity. Because men, it seems, feel the time is overdue to delve into the mystery of why a man’s identity is so closely connected to what he does for a living.

Imagine you are at a dinner party with people you know merely in passing. Elevator speeches circulate the table, each person sharing a morsel about themselves. Likely, you have noticed people rarely lead their intros with their hobbies when in this situation, never do they wax on about music they love, or their passions. Almost every single person will talk instead about what they do for a living. And it is not just men, but women also, a big reason stay-at-home parents appear apologetic when they join a getting-to-know you conversation. Because somewhere along the route of their existence, they have learned occupation goes first, is the most important component of what a person is…even though this is fallacy

So to the man who suddenly learns he is disabled and unable to find a job in a private sector, that he should not expect to receive a regular paycheck anymore, it’s an enormous blow. Not only is he charged with finding a new way to contribute to his family, but he must shuffle through the options in his mind of who he really is, while juggling damage control, both physically and mentally.

Perhaps more vitally, he must be okay with accepting his own perception of the man he was and the man he is now destined to become. The control he thought was at his fingertips has been rudely yanked away and he may find himself alone, sensing no one understands…except maybe another man who has been thrust into the same situation.

This reality reinforces the need for men to find a support group ASAP when their health takes such a dramatic dive. Support groups help a man to lay down the mantle of expectation and find common ground with other men seeking to re-identify.

Enter Kevin Weilacher, a transverse myelitis support group admin, who continues to fight the voices in his head telling him he is not the man he once was, and who shares that it can be a dark place sometimes. He alleviates his demons of feeling less-than by finding commonality, compassion, validation and understanding among people diagnosed with the same disease. Including this writer.

Shawn Henfling, a GMP editor, grappling with depression, offers “Many men take their personal identity from what they can do. Limiting that creates a cognitive misalignment that can be tremendously problematic.” Writing about the menacing shadow of his mental illness helps him to at least sort out his feelings.

Depression and chronic pain have forged a definite connection, afflicting scores of men facing disability. The statistics are stark.

The National Center for PTSD states “Numerous studies have indicated that many patients who experience chronic pain (up to 100%) tend also to be clinically depressed (8-10). In fact, depression is the most common psychiatric diagnosis in patients with chronic pain. The experience of progressive, consistent chronic pain and disability also translates for many individuals into having thoughts of suicide as a means of ending their pain and frustration.”

It is critical to remember if you are suddenly struck down with a disabling illness that there are steps you can take to find yourself again, and to overcome your beliefs you have morphed into an inferior, sub-human…or as if you were lost, because you were never lost.  Perhaps you will not fully fit into the model of the man you supposed yourself to be, but many times a man who becomes disabled discovers a better version of himself, hidden under the layers of societal assumptions. A few men have even admitted they feel freer, as if they’ve been unshackled to discover a deeper calling, and to fully explore uncharted territory within themselves.

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What are disabled men combating internally?

  • An inability to envision themselves as a non-working individual, which can plague a man for years after a diagnosis.
  • The acceptable ideal of the value of their work and their role as provider, or contributor.
  • The understanding, wrong or right, that they have been charged with finding financial solutions.
  • The quandary of living in an unbalanced reality, where now a caretaker may be more involved in the daily commitments.
  • Conquering his destructive self-talk that he is no good, no longer viable as a man, that he’s become a burden to his family and friends.
  • Searching for a reason to live if he cannot help to build his own legacy, e.g. leaving his children better off after he dies, through monetary or other means.
  • Contending with people in his support circle who may not believe his pain, depression and misery exist (especially prevalent in cases where a man is afflicted with an invisible illness, e.g. multiple sclerosis, fibromyalgia, transverse myelitis etc.)
  • The resulting situation when they push themselves too far, sometimes even endangering their physical person. An unsteady man wobbling on a chair to change a light bulb, for example.
  • The inability to ask for help.
  • Extreme guilt at being placed in such a situation and the erroneous suspicion he has selfishly saddled his family with no choice but to take care of him, robbing other family members of their potential to enjoy a full life.
  • Pushing people away who have a vested and loving interest in helping him, i.e. refusing their care and nurturing through a self-sacrifice of rejection/martyrdom, so his loved one can be released of their loyalties to him.
  • The inability to convince himself he is still deserving of love.

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What can men do to combat the false illusions of their reduced value and redefine their identities in a positive and healthy manner?

  • Find a hobby. Men who channel foundering energies into a pastime are able to process the realities of their new existence.
  • Make sure the hobby fits in with your needs. Some men feel compelled to answer their urge to “do manly things” like rebuilding cars, or woodworking. Pick up what gets you in touch with your redefined purpose as a man. Doesn’t matter if it is growing the best azaleas in the neighborhood, opening a dress shop, or taking up wheelchair basketball. Even start a support group. The key is to apply your efforts into activities, which foster your meaningful life.
  • Be honest about what accommodations you need both at work and in your home. Communicate your expectations and listen to the expectations of others. Leaving people guessing results in misunderstandings. This includes talking about your sexual needs, too! A lot of the time your partner may feel as though that part of you has just shut down, that sex is the furthest thing from your mind, taking a back burner to medical demands. They might also speculate broaching the subject of sex will be seen as inconsiderate and selfish by you. So bring it up! Be honest about what you want and offer reassurance that your SO’s guilt is unnecessary.
  • Have a ready phrase to replace your negative self-talk. Tell yourself there are many ways to provide value. Your tasks have changed; your quality as a human being has not. Try, “I’m valuable because _____.” Or “I am still important to my partner because _____.”
  • Realize you are worthy of love and consideration even if you are disabled and yes, you still retain the right to fight for a healthy relationship. Your needs as a person have nothing to do with your needs in a relationship. Do not allow these two separate entities to cross and confuse the facts.
  • Allow your caretaker their feelings without internalizing blame. Shut those shameful thoughts down as soon as they appear. Do not give them a chance to take root in your brain. Caretakers get tired and cranky, too. Permit them this right and do what you can to show your appreciation, as well as offer options to have your needs met, which show your understanding of their truths. Let’s say you are so exhausted you can’t make lunch for yourself, but your caretaker is finishing up a project. Wait until you know their task is complete before making requests. Conversely, do what you can to help. If you are in a wheelchair, volunteer to fold the laundry. If you have a hard time with physical stamina, take over paying the bills.
  • Refuse anything less than a positive support system.
  • Be gentle with each other, over-accommodating even. Assume your SO has the best of intentions always and give them leeway to make mistakes as you would in any healthy scenario. They are allowed a bad day, to struggle with human emotion. To muddle through being a person… When one of you snaps at the other, give them the benefit of the doubt they do not mean to hurt your feelings. This is the time to be forgiving, empathetic and to really walk in the shoes of the other.
  • Recognize everyday chores and must-dos, medically and otherwise, do not require emotion. They merely necessitate logistics. Divvy to-dos up non-emotionally and save you and your family from needless damaging drama.

At the end of day, realize you are more than a man, you are a human being who is afforded the right to feel secure, loved, inspired and validated. No matter your physical condition. You have always had, and will continue to have WORTH