When you first learn you have a condition that is considered a disability, it’s frightening, to say the least. A disability is a physical, mental, sensory, cognitive, or developmental condition that limits your ability to do certain things, restricting your independence. This week I learned the retina in my right eye had detached almost completely, and the vision I now have maybe all I’ll ever have; it was quite unnerving. When I learned my other eye was also compromised, for the first time I began to appreciate that I might have to negotiate the rest of my life as a person who is blind. That was terrifying.
While some people are born with their disability, others may develop one or more conditions at any time throughout their life. Learning how to adapt to a new disability can be difficult. While I’ve had rheumatoid arthritis and mild asthma for many years, I am new to learning how to navigate the realm of visual disability. This new diagnosis comes with an overwhelming sense of fear, anxiety, and apprehension at what the future holds. With that in mind, I realize that perhaps it’s easier for me to face that future simply because I know more about the resources and coping mechanisms available to someone with a disability than most. I am an Independent Living Specialist for Disability Network/Lakeshore, and I’ve spent the last ten years working to help people increase their independent living skills and avoid being institutionalized because of a disability. I’d like to share some insights from my experience as I learn to cope with my new diagnosis.
Learn as Much as You Can
First, I believe it is most beneficial to know as much about your condition as possible. How can you reasonably know what to expect unless you understand what is happening within yourself? When my vision started failing, I went online and looked at what possible explanations there were for what was happening. I kept in mind that just because I was reading a description of what might be causing my particular symptoms, it did not mean that it was the actual cause; it was a possibility. Once I knew what the possibilities were, I called my doctor’s office and made an appointment. A side benefit of having done this research ahead of time was that it helped me define more clearly what I was experiencing.
That can help in a very practical way. If you write down your symptoms, you may notice patterns. For example, you might see that things are harder in the morning, after a long day, or when you are tired. You may notice what makes things better or worse. That can help you talk with your doctor in a clear way. It can also help you ask better questions, such as:
- What is happening in my body?
- What changes should I watch for?
- What should I do if symptoms get worse?
- What can I do at home to help?
Getting good information does not mean trying to diagnose yourself or replacing medical care. It means learning enough to be ready for the appointment and to understand what comes next.
Be Part of Your Treatment Plan
Once I had a diagnosis, I was better prepared for taking part in my treatment plan. That’s important to me, not just because this is my body and I want a say in what happens to me, but because I know myself better than anyone else, and I know what treatment options have the best chance of success with me.
My doctor explained what I was facing, and laid out the options for what could be done to try to stop my loss of vision, and perhaps even to reclaim some of what was lost. That’s a plan I can support. I learned the best methods for treating my condition and I was given some choice in developing my treatment plan. I’ve dealt with this doctor in the past, and I have faith in his abilities, else I would not have hesitated to seek a second opinion.
Being part of your own care can mean more than one thing. It can mean asking why a treatment is being suggested. It can mean saying what you can and cannot do. It can mean sharing concerns about side effects, cost, transportation, pain, fatigue, or fear. It can also mean taking notes at appointments so you can remember what was said later.
If you do not understand something, ask for it to be explained again. It is okay to say, “Please use simpler words,” or “Can you write that down for me?” Good treatment works better when you understand it.
Take Care of Your Body and Your Energy
I accept that I have a responsibility to do my part in making my treatment plan work. I have to take care of myself as best I can in order to facilitate healing and the adjustments I’ll be going through. That means staying as active as I can while not doing so much that I make the problem worse. It also means eating well, getting enough sleep and rest, and following my treatment plan to ensure I have the best chance of a good outcome as possible.
That kind of self-care is not always easy when you are scared. Still, small steps matter. Sometimes self-care means resting before you are completely worn out. Sometimes it means taking a short walk instead of trying to do everything at once. Sometimes it means asking someone to help with a task so you do not use up all your energy in one day.
It may also help to keep your home and routine simple. Put often-used items in the same place. Leave enough light on if you need it. Use tools that make daily tasks easier. If your condition affects your vision, hearing, movement, or memory, changing the setup of your space can make a big difference.
And if you need help figuring out those kinds of changes, Disability Network/Lakeshore can help. Their services are free. They can help you think through options and connect you with support. You can call them at (616) 396-5326.
Do Not Face It Alone
Finally, I realize that I don’t have to face this alone. I have family and friends who will be there for me and who will do whatever they can to help. I’m not afraid to ask for that help. While I am familiar with many community resources, if I don’t know where to go for what I need, there is a place that will help me find those answers: Disability Network/Lakeshore. That makes it possible for me to face the darkness if it comes.
Asking for help is often one of the hardest parts of a new diagnosis. Many of us want to handle things on our own. We may worry about being a burden. We may feel like we should already know what to do. But support is part of living well with a disability. Help can be small and specific. For example:
- asking a family member to drive you to an appointment
- having a friend read paperwork with you
- asking someone to help you make a plan for meals or medicine
- calling an agency for information and referral
You do not have to know everything at once. You do not have to solve every problem today. You only need the next step.
There Is Help for the Road Ahead
Having a new disabling diagnosis is frightening. While it may feel overwhelming, it’s not something you have to face on your own. Disability Network/Lakeshore has been there for me, and they want to be there for you too. Don’t be afraid to ask for help. It is not a sign of weakness; it’s why they exist! Call them at (616) 396-5326.
If your disability is new, give yourself time. There may be grief along with the fear. There may be days when you feel strong and days when you do not. That is normal. Learning to live with change takes patience. It takes information. It takes support. And it takes the choice to keep going, one day at a time.
Disability Network/Lakeshore serves people with disabilities in Ottawa and Allegan counties, Michigan. Their office is at 442 Century Lane in Holland. If you need help learning about your options, building independent living skills, or finding community resources, reach out. The support is free, and you do not have to figure it out by yourself.