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10 Ways to Avoid Becoming Invisible With an Invisible Disease

My name is Trevis L. Gleason, and I live with MS. MS is a neurodegenerative disease of the central nervous system that can affect all aspects of life — the visible and the invisible.

I must admit to you that this post was begun as a lament about the very real prospect of becoming invisible to the world around me, as a result of having a relatively invisible disease. I have seen many friends fade away into the mist of chronic illness, and I felt myself slipping into the edges of that same mist.

There is much that I am no longer able to do at all or as well as I once did. Consequently, it sometimes feels as if the bigger, broader world is moving on without me.

But I don’t want to be left behind, and this feeling has prompted me to take a look at what I can still attempt. After all, it is in part our job to find places to latch on so we are not left behind.

I hope that you find this list helpful, and I invite you to add your suggestions for keeping yourself engaged and visible.

1. Keep Working

We work for more reasons than just getting a paycheck. The schedule of getting up and getting out would be reason enough to stay employed. The social interaction, feeling of being useful, and, of course, the money are additional reasons. If you need to adapt your work, step back a bit, or move down the ladder by a rung, that’s fine, but keep going for as long as you safely can.

2. Find a Support or Self-Help Group

Living with a chronic illness is difficult. No one knows that better (or knows the little tricks for doing it well) than people who live with your condition. Self-help groups are as varied in personality and intent as you might possibly imagine. Find a group — even an online group — that shares your sensibilities and your goals and become a participating member.

3. Engage With Patient Advocacy Organizations

If for no other reason than to find a support group, get in touch with your patient advocates. There are often several different organizations for a given disease. Find the one that, again, shares your goals and offers the services you require now or may need in the future. These organizations are also a wonderful outlet for volunteer energy. Trust me on this one: The energy you expend volunteering for your cause will be returned many times over.

4. Exercise

The evidence of physical benefits of exercise on many diseases is still fairly new. It wasn’t that long ago that people with multiple sclerosis were told to not exercise so they wouldn’t get fatigued. Those days are now gone. A strong body recovers better and faster, and that’s not to mention the positive mental effects of exercise. The social aspect of group exercise or simply getting out with others cannot be forgotten either.

5. Call Old Friends and Meet New People

As time passes and we may, indeed, not be able to get “out there” as much, it is important to keep reaching out. The older we get, the more we realize that most of our friends have “something” wrong with them as well. Reconnecting with long-lost pals can be made easier via social media outlets. Just make sure that you are interacting with people face-to-face as well as online.

6. Find a Mental Health Professional

We become pretty good at coping as we go along, but sometimes we get stuck, and sometimes we don’t even see the signs that we may be headed for the quagmire.. If your coping methods have started to feel like practicing the same wrong note over and over again, it’s time to get some help. A good rehabilitation psychologist can help identify common pitfalls and specific issues to monitor as well as offer new coping skills to supplement those we have. You don’t have to do it alone.

7. Adapt Your Passions; Don’t Abandon Them

When the things we love become too difficult, we needn’t give them up. Many can be modified if we keep the true function of them in mind. For example, if you loved giving elaborate dinner parties because of the joy of having friends around for a meal, turn your parties into a supper club, where everyone brings a course or dish to fit a theme. If you loved running half-marathons for the camaraderie, volunteer on the next race committee. Teach beginners how do to something at which you were once an expert. You’ll be around people who are just discovering a passion that you’ve developed for years, and the entry-level skills may be something you still possess.

8. Learn Something New

For someone with a neurological condition or just to combat the effects of normal aging, learning a new skill can improve brain function by volumes. The social aspect of learning in a group also feeds several of the previous points listed. Don’t be afraid that you’re not good at whatever it is you’re taking on — you’re a beginner in a group of beginners. Learning can be fun, and it will keep your brain younger.

9. Adjust Your Financial Plan

No one knows what the future will bring, but it’s likelier than not that our future will be different from the one we had planned. Just as you might rethink the layout of your home, you must reexamine your financial goals and plans. It’s never too late to start, and the old adage that “If you fail to plan, you plan to fail” was never truer than when planning your financial future. Those patient advocacy organizations may be able to help with this item as well.

10. Don’t Be All About Your Disease

Finally, don’t let your whole life — or even the majority of it — be about your disease. It is part of you, but it’s not all of who you are. Just as you might tire of someone talking only about their kids or dogs or job and seemingly nothing else, others will likely tire of hearing exclusively about your condition and how you’re coping with it. You are more than your disease. You are a wonderful person. People like you for a variety of reasons. Remember that, and you’ll have plenty to talk about other than how you’re doing that particular day.

Story Source: The above story is based on materials provided by EVERYDAYHEALTH
Note: Materials may be edited for content and length


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