Living Well with a Hidden Disability, by Stacy Taylor, LCSW

Stacy is a psychotherapist in private practice in the San Francisco Bay Area of California. She has been a licensed therapist for over 35 years. In 1999, Stacy published a book entitled Living Well with a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life. Her website and blog are at www.stacytaylortherapy.org.

I have used and recommended Stacy’s book for 25 years and love her compassionate, valuable suggestions. It is out of print but well worth seeking from secondhand book sellers.

I am thrilled that Stacy generously agreed to share some of her vast practice-based knowledge of coping with chronic disease with us.

Enjoy!

1. What is a hidden disability? How does the experience of someone with a hidden disability—such as ME, fibromyalgia and environmental sensitivities—differ from that of people with a visible disability?

First, Ellie, I would like to thank you for the opportunity to be interviewed for your blog. I also want to congratulate you on your website and your podcasts, which are highly professional and compelling.

As for hidden disabilities, I became interested in the concept in the 1990s. I had a minor injury that triggered all sorts of unusual symptoms, which defied diagnosis. I made the usual rounds among medical professionals and alternative practitioners and spent thousands of dollars in the meantime. Unfortunately, it was to no avail, and much of what I tried made me worse.

I was struck by how cavalier so many people were about my condition. Many people dismissed the problems as psychological; others offered unhelpful suggestions about using magnets or going to a psychic. So it is from first-hand experience that I know about the world of hidden disabilities, which can also be called “invisible illnesses.” 

To get back to your question, hidden disabilities are medical (or psychiatric) conditions that cause impairment in at least one area of life. It could be the inability to hold a job or to work at the level one is used to. There could be significant physical pain and/or exhaustion. The symptoms are real, but they are often dismissed by professionals and also loved ones.

In contrast, when someone has a visible disability (for example, sight impairment or being wheelchair bound), the condition is obvious. People will generally offer help in public places, such as holding the door open for you. While it is not an easy life at all for people with visible problems, their suffering is recognized and affirmed.

Here’s an example: If an older person walks into the post office using a walker and there is a long line, the staff would understand if she asks for a chair to sit on. But suppose a healthy-looking, 28-year-old woman goes into the same post office and asks for a chair? Likely, she will be received skeptically, although she may need the chair as much as the other woman.

2. How does grief experienced by people with chronic hidden disabilities differ from grief around death?

That’s a great question, and the differences are many. For one, society may not recognize your grief in the way they do a death. When someone dies, there is often an outpouring of care. Neighbors may bring over casseroles; friends send flowers; and people deeply empathize with your pain.

And yet with hidden disabilities, most people don’t understand your grief. They may cajole you to “cheer up, it could be worse,” making you feel alone in your sadness. 

There are so many dimensions to your grief. You may grieve the person that you once were, who was, perhaps, energetic and upbeat. You may grieve the big things (working full-time, traveling), as well as the small aspects of life.  

I remember someone once telling me that she misses being able to tackle the clutter in her closet. She looks into the messy closet and feels so frustrated that she can’t just go in there and clean it all up. It may seem like a minor problem, but for her, it feels devastating. 

Generally, if someone grieves a death, the acute emotional pain may subside in time and become more manageable. The challenge, though, with hidden disabilities is that there may be an ever-ending grief cycle. The grief may go on as you find more and more aspects of your daily life difficult to accomplish. 

3. The emotions experienced by people with hidden disabilities can be overwhelming and traumatizing. They are often related to uncertainty about the future, lack of clear diagnosis or treatment plan, multiple losses, not being believed or supported and much more. Common emotions include fear about the future, guilt (it is my fault), shame (I am faulty), envy (why can others live a full life and not me?), anger (why isn’t anyone helping me?) and more. What are some strategies to safely feel, process and heal strong emotions? For people who are reluctant to dive in, is it worth doing this hard work?

That’s an interesting question. There is a belief in our culture that all difficult experiences have to be spoken about in depth in order to heal. I am in the minority in that I question this. If people feel it would be helpful to sit with the intense feelings and for a protracted period of time, that is fine. But for others, this may not be helpful and could, in fact, be re-traumatizing. I take my lead from the client.

As an example, there is a popular therapy called Critical Incident Stress Debriefing Therapy (CISDT) that was created many years ago. After a severe trauma at work or in the community (e.g., workplace violence), teams of therapists are called in to do this type of therapy. CISDT is generally performed in groups, for several weeks or months, where witnesses to the event talk in great detail about what they experienced.

A study was done to assess whether this approach helps over time. Researchers assigned some people to a control group where they didn’t receive any therapy, and others who received CISDT. Then they compared levels of functioning and depression a year out. 

It turned out that those in the CISDT groups did much worse. There was something about reliving the horror over and over that etched the images into their brains. The other group—who dealt with it by themselves or with loved ones—did much better a year later.

The point is that how people want to deal with psychological pain is up to them, and there are no rules around it. I think it’s important to honor people who find it useful to talk in-depth about their emotional struggles, as well as those who don’t find this helpful. For some people, distraction is a better approach. Cognitive behavioral therapy can sometimes help with thought stopping, substitution of positive images for negative ones, as well as other techniques. 

4. Parents of school-aged children often feel guilty and sad that they can’t be the parents they hoped to be. How can parents talk to their children about their hidden disability? Can the disability ever strengthen the relationship?

Children can handle a lot! In my private practice, some of the most dysfunctional young adults I see are the ones who’ve been coddled and overprotected by their parents. Childhood is difficult for many of us, but somehow, we get through it.

And many children are stronger, more resilient, and more empathic because of going through hardships when they are young. I think of one young woman, my best friend’s daughter. My best friend’s husband died when their daughter was just 11. Tragically, my best friend contracted early-onset Alzheimer’s Disease a few years later. Her daughter had to witness her slow and devastating decline over the course of about 15 years, until she died a few years ago.

And yet her daughter, now in her early 30s, is kind, upbeat, and outgoing. Although I would never have wished this tragedy on her or anyone, I think it helped her become a deeper and more compassionate person.

As for how to talk to your child, I’d suggest explaining things in a matter-of-fact and age-appropriate manner. Try not to sound apologetic or guilty! You have nothing to apologize for.

A child’s main anxiety will be around whether you will be okay and whether the child will be okay. Explain that your health conditions are uncomfortable, but not life-threatening and that you and daddy (or whomever) will always be there to take care of the child. Be there to answer any questions, but don’t overdo the talk. You don’t want the child to experience undue anxiety and obsessions about your health problems. 

Feel free to enlist your child in helping you. Children like to help! Just ask any teacher. Kids often compete to wipe the chalkboard and carry items for the teacher. There’s no reason to feel bad if your child has to help you at times, as long as the child isn’t overburdened.

An interesting aside: In Japan, school children are required to clean up their classrooms every day. But I don’t mean tidying up. I mean sweeping and mopping the floors, taking out the garbage, dusting, and cleaning the windows. Japanese schools do this to teach children to become more responsible and to work cooperatively. 

If the schools in the US suddenly required the kids to mop the classroom floors, the parents would have a fit! It’s just a different mentality in the US versus Japan. Given Japan’s high ratings for everything from life expectancy to test scores, they are doing something right! So, it may be a good thing to have your children help out as well.

5. How can people talk about their hidden disability to friends, family and professionals who don’t understand or believe the condition is real?

Someone once said, “What you think of me is none of my business.” You can try to explain your condition. But you don’t want to use your limited energies to try to convince others who are skeptics. Some people are just too set in their ways to think outside the box. And, for a lot of people, illness is something that frightens them so much that they just can’t go there. 

If a loved one brings up your illness in a way that annoys or stresses you, try saying, “Thank you for your concern. I appreciate it. But I’d prefer not to talk about my illness at this time.” By saying this, you affirm that they are coming from a good place (hopefully they are!) But then practice self-care by not exposing yourself to doubt or negativity.

There’s the spoon analogy: those with chronic illness start the day with a few spoons and use them throughout the day. But they end up depleted if they use them all up at once or needlessly. So don’t use your spoons to try to get through to people who aren’t like-minded.

6. How can people with hidden disabilities rebuild their self-esteem and their lives so they have a felt experience of purpose and meaning?

I like Logotherapy, which is the therapy of meaning. It was developed by psychiatrist Viktor Frankl, who was in the Nazi concentration camps during World War II. Logotherapy teaches that whatever you experience is bearable because there is inherent meaning. 

To rebuild self-esteem, remember that every life is precious, including yours. There’s no reason to feel bad about yourself if you have a chronic health condition. The only people who should experience low self-esteem are the ones who do bad things—and yet most of them have inflated self-esteem!

All we can do is make the best of what we have been given. In the US, there are often unreasonably high expectations about this life. But life is hard, and no one is promised a seamless life. 

If possible, focus on what you can do, not what you can’t do. Try to do one thing a day that is enjoyable to you, even if it’s just listening to a podcast or a song that you like.

Reach outside of yourself as much as possible. Mother Teresa spoke about doing “small things with great love.” There’s always a way to be of service to others, despite your limitations. 

If you are only up to going to a store briefly in the course of the week, that’s okay. Smile at someone in the store and be kind to the cashier. We live in a world that has become increasingly darker and meaner, and, in such a world, a smile at a stranger can be a revolutionary act.

7. How do we deal with envy? It can be hard to see others traveling, being promoted at work, getting married and having babies, while people with health challenges can, at times, barely get out of bed.

Let me tell you a story. A few years ago, I attended a week-long silent retreat. Right before the retreat started, there was this lovely young family saying goodbye, since the mom was doing the retreat. Her husband was handsome, and her little girl adorable, and they looked so happy together.

During the retreat, envy came up for me towards the woman. She smiled cheerfully throughout the retreat. No wonder she’s so joyful, I thought. She obviously has a perfect life!

At the end of the retreat, we all sat in a circle and talked about our experience of the retreat. What the young woman shared made my jaw drop. She said, “I was just diagnosed with life-threatening cancer. I am attending this retreat to clear my mind and decide what to do.”

Instantly, I felt so ridiculous for my envy! Here, this poor woman was dealing with a catastrophe worse than anything I’ve ever experienced. The takeaway: We don’t know what is really going on in someone else’s life, so envy makes no sense. 

No one in this world is immune to suffering. Being able-bodied is just temporary. At some point, illness, aging, and, eventually, death will knock on everyone’s door. 

8. One last question: people with chronic health conditions can feel isolated and alone, given that so many people around them appear healthy and active. What would you suggest to them?

Your question reminds me of a talk I went to years ago with Stephen Levine. He was a popular teacher and author who specialized in death and dying.

During the talk, people would stand up and tell their stories, which were often heartbreaking. One story stood out for me. A woman talked about her beloved 20-year-old son, who went for a hike with his friends. He had a freak accident on the trail and fell to his death.

The woman sobbed while saying, “I had one child, this amazing son. And now I have no sons, no children at all. I feel so alone among others who still have their children.”

Stephen Levine looked at her and said emphatically, “No! You have joined the community, all over the world, of parents who have lost their children. You have never been less alone.” There was an audible gasp from the audience when Levine said this.

So, I will repeat this truth to your readers. You are part of a larger community, all over the world, of people also dealing with chronic conditions. Although you may feel isolated in your pain, fear, and sadness, know that you are not alone.

Did you know that I host a program with 2 x live sessions each month in which you can learn more about topics such as Chronic Disease.  The program is called Live! with Dr. Stein.  These sessions provide actionable management strategies for people with chronic complex diseases. You will get science based information and the chance to ask your questions of me and my growing community of life long learners. Subscribers to Live! are granted free access to amazing experts on a wide variety of topics—The Expert Speaker Series is approximately monthly.