HandicapSign

Lia Seth is a young professional in her 20s. When she sat in the disability section of the bus, one woman was so offended that she started yelling at Lia to give up her seat for seniors. But Lia is disabled: she has a disease that affects her joints and often leaves her tired or sometimes needing a wheelchair. As part of our “In My Experience” series spotlighting the personal stories of our listeners, we talk with people who have physical disabilities that aren’t visible to the naked eye. How do those disabilities affect their everyday lives?

Guests:
Lia Seth, writer and blogger who has Ehlers-Danlos syndrome
Ariyele Ressler, former social worker who has chronic fatigue syndrome
Jim Voos, former executive at Accenture and Intuit who has spinal stenosis and chronic pain
Sarah Schafer, former public health physician for the City of San Francisco and Contra Costa County who has Sjogren's syndrome

  • Guest

    I’ve a neck fused, with a plate, and degenerative disease of the spine. I’m herniated above and below the plate. Trauma from five whiplashes in the early 1970s that didn’t present until the early 90s..

    I walk fine, if a little stiffly; I turn my entire trunk to move my head. My arms and hands have perhaps 30% capacity as they did ten years ago. The decline was over a period of months in 2002.

  • F.j. Bear Left Knab

    Too many abdominal surgeries have left me with a giant ventral hernia, but people always ask me to help lift and expect me to do the things I did before I became disabled. So they miss on the diagnosis, but want to play doctor anyway and tell me how I’m not disabled because I “don’t look disabled.”

  • Dave Summersett

    Have you ever noticed it seems to always be the righteously ‘full abled’ who start these public witch hunts. I’ve seen far too many and been the object of several. I usually just take a coin out of my pocket and rap it on my metal leg, that tends to shut them up.

  • Mrs. Eccentric

    oh boy……i will only say that the worst part of this is that many doctors fall into the ‘you look great, what’s the trouble?’. and if you persist, well, you must be wanting attention, a hypochondria, looking for drugs….

    it’s too difficult for me for me to listen to this – my best wishes to all the guests, and and others dealing with this situation.

    and what kind of nitwit doc doesn’t realize that joint dislocation can be excruciating? have they heard of the rack, strappado? modern medicine has it’s own barbaric side……steph

    • Akin2

      I think part of it is that doctors are deincentivized against prescribing tests by our crooked private insurance system, unless you’ve having a physical exam done.

  • kellyalways

    I am a 26-year old female with an undiagnosed congenital myopathy. By looking at me, you wouldn’t notice per se. Since I was born, I’ve had slight muscle weaknesses — I nearly always narrowly reached milestones, however late. I did not walk until I was 22 months old. Growing up in a very active family meant that I had to participate in physical activity including skiing, swimming, softball, soccer, hiking etc. Before I was an adolescent these activities were not that difficult. However, when puberty set in, these activities proved to be incredibly difficult and after I broke my arm when I was 12, I never returned to team sports. A concerned school authority suggested that I visit a neurologist when I was 14, and immediately based on mobility tests he suggested that I had slight muscle weakness. A muscle biopsy with allegedly one of the premiere neuromuscular specialist proved to only show undiagnosable abnormalities. I was exempt from physical education in high school, but suffered silently. I cannot walk fast, I have incredible difficulty walking up stairs (I have to always hold onto handrails, and oftentimes I can only go up one stair at a time). It’s difficult for me to walk up hills. I rarely ever sit down on the floor because I cannot sit crossed-legged (never have been able to) and it’s difficult for me to get back to standing position. I am not open with my muscle weakness, though I am sure people have commented on a limp. I fall a lot. Since I do not have a specific name for my condition, I tend to be secretive about it.

    I wish I had a better method of being honest about my condition. People generally don’t understand why a normal looking 26-year old would have difficulty going up stairs when there are people nearly three time my age who are way more active than I am. I am not lazy. I have tried physical therapy. It is my one desire in life to get a diagnosis so I do have a community to reach out to. It’s hard to label myself as disabled, it’s a pride thing. Thank you so much for this conversation.

  • Rafaello

    I had my hip replaced when I was 15. I physically can’t stand still for more than a few minutes at best (walking is fairly fine), so I need a seat at events/on public transit. I get a lot of dirty looks from other adults when I take the last seat (which really kills me because I used to be the guy who would always give up his seat, sometimes multiple times on a single ride).

  • Mrs. Eccentric

    hi sarah – thank you for your honesty about how people don’t always behave like the supportive, warm, loyal people you see on Hallmark specials. It’s one of the most painful parts of these situations, and it’s very rarely discussed.

    and like you, i am so lucky to have a spouse who has stuck by me through some really awful, horrible times even though it is very hard for him – it makes me admire him more.Take care, steph

  • Brett McWilliams

    I have stenosis.I went from working with small children, having chronic pain, searching for a doctor who diagnosed me finally and having to take a year off. Then, I found that working with older larger children is easier on my body and I have to be the queen of ergonomics or I can get a flare up for days. and I have found that certain Pilates, Physical therapy and water therapy have helped. I also found a new medication called Gralise. It’s not perfect but I am managing my stenosis. I have found that not moving makes it worse.

  • Meave

    Great show! I don’t always use my wheelchair. Thanks for letting our side of the conversation out of the closet. 🙂

  • Weiwei Ye

    I really want to share some positive experience I have. Hopefully it can help more people.

    I was a person like to travel a lot. About 3 years ago, I was diagnosed having IBS. My abdomen cramp with something bad when I thought about a 5 min trip or 30 min meeting. I had panic attack. All I was told by different western doctors were this was not a real disease and it was in my imagination. I tried all kinds of relaxation exercise. It improves a bit. I can make 10 min trip. Eventually, I turned to acupuncture as I ran out of options. It helps a lot. I just went to San Diego for a week. Still could feel the pain but it’s durable. And it was the first trip in 3 years!

    My suggestion is keep research on your problem. There are new cure/relief somewhere. Try alternative options. I had never had acupuncture before. Now I believe the Chinese traditional medicine is better on curing chronic disease as it targets the cause vs. the western medicine more targets the symptom. Note: you might need to try couple of acupuncture doctors before you find the one right for you. Be patient, what can you loose by trying.

    Good luck!

    • ariyele

      acupuncture (and lifestyle changes, and herbs, and diet, and western meds) have been helpful to me in managing my symptoms! good call and thanks for pointing out the need for a holistic approach.

      • Weiwei Ye

        As long as we don’t give up trying.

    • Sarah Schafer

      Agreed. TCM and qigong most helpful things in addition to some meds and basic lifestyle support. Went through many TCM practitioners and qigong etc. practices before I got definite results. Still a long way to go!

      • Rob

        Hi Sarah: thanks for presenting on this condition. The observation that few folks know and understand the condition is very true indeed: I’d never heard of it until my 50’s! I too, at 62, have been diagnosed with Sjogren’s, but with various tests through a rheumatologist, it’s clear that I have primary, not secondary. The odds of it melding into a more “advanced” secondary stage are not necessarily that high, from what I’ve read.

        So, I’m confused as to why that distinction in the disorder wasn’t mentioned in the program. The symptoms are indeed far less disabling and manageable, and I almost consider myself “lucky” to have the more mild condition.
        ROBERT

        • Sarah Schafer

          Hi Robert,
          I think you are confused about what primary and secondary Sjogren’s means. Most Sjogren’s agree it is not very useful distinction clincally – both primary and secondary (which means occurs with other major AI disease such as lupus or RA) can range from mild to severe.
          You may want to contact Sjogren’s foundation to find about local resources including our list serve, both international or bay area group. Lots of good reading available on the website (see link). I’m glad you are doing well. Do good self care, especially regular sleep, and be grateful!

  • rplantz

    Excellent program. I have a very good friend with chronic fatigue syndrome. She is very good about helping us plan our activities with her to accommodate her needs.

    Another thing that makes this so difficult are the fully abled people who abuse the facilities we have set aside for those who need them. I have probably glared at people with invisible disabilities (in special seating, etc.) but am guessing that I have glared at even more who are simply abusing the system. How to deal with this is part of the “passing” issue. As an older gay man, I recall dealing with this back in the 60s. It was important to my psyche that people accept me as I am, but I was aware that it was sometimes convenient to “pass.” Of course, the bottom line is that there is nothing wrong with what I am, so “passing” should not even be an issue.

  • Jessica Amber

    I’m a 26 year old female suffering from Chronic Neuropathic intestinal Pseudo Obstruction (AKA Enteric Neuropathy… which has also caused malabsorption syndrome and extreme weight loss from nausea, vomiting, and lack of appetite) as well as Obstructive Sleep Apnea. In 5 years, I’ve had 11 picc line IVs for TPN and IV fluids, 3 Groshong Chest Catheters for safer use of TPN (although I ended up with Sepsis), and a Jejunostomy Tube for enteric feeding.

    I’ve been through it all with invisible illness… I’ve been told I’m a hypochondriac, that I’m looking for drugs, that it’s all in my head… I’ve had doctors refuse to treat me because they felt I was lying. I’ve had ER Drs refuse to give me pain meds or nausea meds because they thought I was coming in for drugs. It took 7 years to get a diagnosis, and I had to go to a specialist in Stanford to even TEST for what I have. Over the years, I ended up too thin and too weak to finish University or continue working.

    I’ve heard it all in the 8 years since I first got sick… jogging and exercise will help you, cutting gluten out of your diet will help you, put on your big girl panties and get over it, you’re abusing the government by being on disability, you LOOK good so you must be FEELING good… it gets old really fast. I make YouTube videos chronicling my experiences, but I’ve just gotten started. I recently made a video all about this titled “But you don’t LOOK sick!” If you’d like to watch it: http://www.youtube.com/watch?v=wCTZZQ-L2hc&lc=sE01jxBuSo37yp0_1lPt0zEZmux1yGO6gWrCZgzr7CY

    Best of luck to those of you struggling with invisible illnesses! It’s been the hardest thing I’ve had to go through, and it seems never-ending… probably because it is. Stay strong, always be your own health advocate, and never give up! HUGS!

    Jess

  • Jennifer Beckham

    I was recently diagnosed with my second “invisible illness”, Fibromyalgia, in addition to Lupus. People think I have a sunburn, just got back from vacation.

    What is clear to me is that most “disabled” people we encounter daily have invisible pain and unknown (to the public) limitations. And people don’t realize our numbers. We don’t go out when we are unable or feel unsteady. We cover most of our bodies and wear corrective devices that are unseen. We try to have a life. It is safe to assume that there are a lot of people are out there “passing”, trying or not. Seeing themselves as disabled, or not.

    I would like to hear more discussion about explaining limitations to employers or clients for those of us who want to keep working when we can. I can’t and don’t want to give up working this early in life, even if it’s part time.

    • Lia Seth

      Hi Jessica – I was on the panel this morning and talked a little bit about my experience explaining my condition to my manager. Due to the time constraints of the show, I couldn’t go into much detail, but I’d be happy to talk with you more about it! What’s a good way to get in touch with you? Or we can have a back-and-forth here, if you don’t mind the conversation being a bit more public.

      • Jennifer Beckham

        Thank you! I heard what you said today, thanks for the hope in humanity and the workplace. My name’s Jennifer, but people make the Jessica mistake a lot.

        I set myself up to work mostly from home to accommodate my conditions. I’m a web developer and work for myself. I have clients that stick with me even if they have to wait. But sometimes I can’t get up, even to get on the computer, and it can stretch into a week or two. We all know the story.

        When I’ve told people I’m sorry there’s a delay, I have a condition, or I’m sick they assume I’ll be better (for good) in a few weeks or I’m just taking vacations. I do meet with most clients occasionally. I’m in my 30s but look younger. They cannot believe anything is wrong with a sharp, rosy faced young lady.

        People don’t know what Lupus or any of the above is, and they don’t want to know (the eyes glazed over thing).

        My friends and possible subcontractor pool have been avoiding me since I’ve gotten really sick, which leaves me feeling alone in this.

  • Emme L.

    There is actually more to Sjögren’s than just dry eyes and mouth – the reason many are on disability. Same illness that Venus Williams has. You can find out more about it at the SSF website: http://www.sjogrens.org/

  • Sarah Schafer

    I want to thank my amazing fellow panelists for their authentic sharing and insights. I kept thinking “Yes, how true!” every time the others were sharing.

    All of the callers were great. I’m especially glad that David from Sebastopol was able to make the point about being your own advocate. I too was quite stunned at how hard it was for me to get a diagnosis, even as a physician. He is quite right about the cookbook approach in the current climate of 15 minute appointments and fragmented medical care. There are exceptions. You need to keep on trying until you find the provider(s) who will go to bat for you.

    Some more thoughts about Sjogren’s: it it is very common, yet underdiagnosed or misdiagnosed. Many people have this disease and are not getting care because of the scattered symptoms, lack of a good diagnostic test and lack of inadequate training of medical providers. Many people in my situation would have been dismissed, and told they were simply stressed, depressed, or even malingering, especially if they are women. One specialist did this to me about 6 months into my initial onslaught of symptoms. I fired her!

    The second hurdle after getting diagnosed is finding a specialist/ team of specialists who really understand the disease and its various manifestations. It should not be hard with a common disease, but it is. It is not all about dry eyes/dry mouth, but many providers just don’t understand that. More studies for systemic treatments are needed, but there are treatments available now that help. For me, a combination of medications, lifestyle management, acupuncture and Qigong has put me into a more stable place with this illness, and has improved several symptoms.

    As Emme L. posted below, there is good information at http://www.sjogrens.org. You probably know someone who has Sjogren’s, even if they don’t know it.

    • ariyele

      it was wonderful to share the panel with you sarah. i hope perhaps we can connect offline and keep the connection alive. there’s so much overlap in the invisible disabilities community even though our diagnoses range so widely. thank you for sharing and let’s try to be in touch!

      • Sarah Schafer

        LIkewise Ariyele. I will ask the producer to forward you my email.

  • mark jh

    Kudos to the fine panel! Disturbed at suggestions disability can be a “gift,” that we should relinquish hopes of a medical breakthrough, that this would even be tenable for many of us. My disability in many ways is no less, no more invisible, I imagine, than some panelists’. Yet I should be so lucky for “invisibility” to be a major issue. (Aside, that is, from some wrongly “adversarial” battles with my disability insurer. Doctors it has retained agreed I am totally disabled despite elite medical care and my unflagging determination.) To the contrary, many doctors, many former girlfriends, pulled away from me when I suffered further medical setbacks — only too well aware how badly I suffer no matter that I remain largely blessed in terms of my appearance. Like many others with disabilities largely “invisible,” my postherpetic abdominal neuralgia has been too agonizing for me to have a family, to find a suitable mate, to maintain any quality of life to speak of. I live for the scattered moments I can still interact productively enough to benefit others, including my beloved kitty, friends, parents. And in the fervent hope that a breakthrough will finally emerge with my medical condition, my treatment, to allow me to resume my career, my life, as much and ASAP. I have the memory and unflagging determination to anticipate a rewarding life — notwithstanding that my medical condition for decades now has been too atrocious to permit substantial quality of life.

  • Judith Nitchie

    Thank you so much for addressing this subject in a public forum! I work with clients with chronic illnesses and pain, many of which are invisible…and I have my own. It can be so very tiresome to need to justify one’s legitimate use of resources such as disabled parking and seats on the bus. The more global effects on the individual of losing abilities can include isolation and depression, conflicts in relationships, and self-doubt. Opening the issue to greater public awareness contributes to the health and well-being of those with disabilities and demystifies this life process for all of us.

  • message-to-share

    Listen to Dr. Bigelsen and the Lyme Disease victims he’s worked with:
    https://soundcloud.com/revolutionarymediagroup/healthfreedomnetwork

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