Take the Time to Learn, Not to Judge

Learn - Don't JudgeThe mission of the Invisible Disabilities Association is to encourage, educate and connect people and organizations touched by illness, pain and disability.

The term “touched by” is for both the caregiver (friend, family member, co-worker, healthcare worker, doctor, etc.) and the loved one living with the illness, pain or disability.

In order to “encourage” we need to be educated which works best by listening to and asking questions of the person living with a health challenge or disability. We can tend to prejudge when with our eyes we do not see the illness or pain or when we have heard from others about their symptoms and try to broad brush all with the same results.

Education breaks down misconceptions and brings about understanding and community. Community is what people who are isolated on a regular basis need. They tend to be invisible (out of sight, out of mind). They need connection with others who care about them and for them so their times of loneliness will be few and far in between. They need to know they are loved first and then through genuine relationship, they can share about their struggles and difficulties. They need encouragement, not to take on the world or run a marathon or scale Mount Everest, but to just make it through the day, or survive the 50th doctor’s visit for the year or write a Facebook post full of vulnerability about their own life.

People touched by illness, pain and disability need each other. We all go through this life full of difficulties, some appearing harder than others yet all impacting relationships the most. Let’s believe first, develop relationship, reach out with open arms to help lift each other to our feet and hug like there is no tomorrow which for some is true.

Finally, if we don’t understand the craziness and apparent contradictions of an illness, we need to ask the person first before coming to a conclusion. Even though they know most people are well meaning with their advice and suggestions, sometimes the misunderstanding hurts more than the illness or pain itself. They want and need relationships! Let’s all learn to care about each other.

Comments

  1. Sherri says

    Others will never comprehend the daily mountains I have to climb just to stay alive: Medical tests, therapies, treatments, paperwork, bills, unfathomable pain, agony and isolation. Nor will they fathom the losses I endure: My career, hobbies, friends and horse, as well as ability to care for myself, be a mommy, spend time with family on holidays, shop, cook, clean and more.

    Yet, I do my best to count blessings every day that others never even think about. Thus, my hope is that my friends and family see me as a person who is hugely positive for what I endure, funny, courageous and encouraging to others in the midst of my own suffering.

    The bottom line is that people don’t have to totally understand my pain and limitations nor why this and why that; a person would have to live in my shoes to fully understand. Loved ones only need to choose to either question the validity and gravity of my illness and my integrity or they can choose to believe, support and love me…. I hope they choose the latter.

  2. says

    Thanks for writing this article – my daughter has Aspergers and is a brain injury survivor (due to meningitis). Every single day, she is misunderstood…sometimes, the expectations are too much, other times, the expectations are too little. She is lonely, but slowly finding a niche, we hope. Thank God for supportive people in her life who have given her more time and insight and who appreciate her creative spirit. She continues to overcome obstacles, however, she gets tired. I get tired too. The article describes the thoughts and feelings I am often surrounded with, but don’t know exactly, what to do with…..thanks for sharing.

  3. says

    Really fine and timely advice to caregivers and families !!!!
    Thank you Wayne !!
    But how can we best help the patients to take their time to learn from themselves?
    Invisibledisabilities is a superb solution for patients to learn from others patients.
    As is Wikipedia, to learn from specialists.
    But how can we empower patients to learn from themselves. To chart their personal lifelong patient journey, not only in narrative retrospect but also along the way, documenting – primarily to themselves- the events, the situations, the symptoms, the treatments, the social contexts, the communications, the states of mind, the worries, the obstacles, – around the clock, from week to week, from month to month, from year to year ?
    The whole idea in user-driven healthcare is, that patients can generate the most important data to improve healtcare. So: How can they best be empowered to handle such self-documentation.?

    Assuming patients to own their own laptop one solution is to offer a downloadable freeware program for a personal and private electronic diary, with build-in options for users adapting it to to their own needs and relevances
    I have been working for 13 years developping such a tool.
    At http://www.phenomenalog.dk latest versions for Mac, for Windows, and also for small-sceen (10inch) netbooks are freely available.
    . User-driven further development of the program in new and improved versions, perhaps also versions adapted to specific (medical) targetgroups is part of the concept.

    There is now published a collective work “User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies” Eds. Rakesh Biswas & Caramel Mary Martin. (IGI Global). Where I’ve written an illustrated chapter 28:
    “Dimension of the Patient Journey – Charting and sharing the patient journey with long term user-driven support system.” It is currently available on http://phenomenalog.wikispaces.com/Dimensions+of+the+Patient+Journey

    I hope members of invisibledisabilities will help to test and improve the freeware program, which presently has only english user-interface, – but where the user-interface later can be translated to all other languages.

  4. says

    After reading Mr. Connell’s message about his wife, Sherri, and the illnesses she suffers (Multiple Sclerosis, Lyme Disease, Multiple Chemical Sensitivities, Traumatic Brain Injury and Anaphylaxis Food Allergies), is truly an awesome feat to endure. We all have mountains to climb and bridges to cross. Some of our mountains are higher than others, and bridges are narrower than others, but somehow, we still manage. This is what life is all about … learning how to live the life we’ve been given. Just because we are alive does not mean our lives will be perfect, without flaws. I know we all realize this. Sometimes, I even forget — or complain about my issues.

    I have Fibromyalgia. I was diagnosed in 1990. Fibromyalgia is a relentless chronic pain syndrome without mercy. I could not believe there was no cure for this painful disease, but there isn’t. After much reading, studying, research, etc — I come to learn that once I stop trying to fight it, I can live with it, tolerably. I began taking all the medications that are suppose to work for it, but the side effects were not worth it. So, I graduated from that learning period into natural herbs, vitamins and supplements. I also incorporated a relaxing exercise regime of my own that is not too strenuous. Having Fibromyalgia you must be careful, even in the way you exercise and the way you get therapeutic massages. Yes, I learned a lot of “how to’s”. Nonetheless, the herbs, vitamins and supplements have helped minimize my pain. Yes, its still with me 24/7, but now I can manage it better. I know what to do and not to do, what to eat and not to eat that will trigger pain. I even wrote a book about it. Visit my website for more information. Mr. Connell, you were given the extra strength, patience and love, to endure that which you must endure. Give my best to your wife, Sherri.

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