10 Things People with Chronic Illnesses Want Mental Health Professionals to Know

This afternoon I have the opportunity to speak to a group of counseling students about working with chronically ill clients. During my own MSW program, we did not talk at all about working with folks with disabilities or chronic illnesses. My assumption is that it's because we're "supposed to treat them like any other client," and in some senses that is true. However, like with other specific populations, it can be helpful to have a foundational understanding of the challenges they may be experiencing, while simultaneously maintaining an open mind and going into a session without any preconceived notions. So in that regard, yes, treat them just like any other client.

Medical trauma is real and so many members of this community are afraid to reach out to mental health professionals for fear of experiencing additional gaslighting or invalidation, or being asked to do things that are physical out of the range of possibilities for them. We also may be dealing with issues like grief, identity, body image, abandonment, rejection, belonging, forgiveness, and communication, on top of coping with the every day physical symptoms we experience. So it may be exhausting to even begin to process some of the psychological stuff.

I know many folks who have had experiences with mental health professionals that were, at best, unhelpful and, at worst, actively harmful so I wanted to make sure I was able to capture what members of this community really wanted to say.

I reached out to a few friends of mine and said, "What do you wish you could tell mental health professionals about working with someone who is chronically ill?" (with the caveat of course that every client is different and it's most important not to make any assumptions prior to meeting them).

Here are some of my thoughts and some of what they shared (with permission):

1. Don't assume we're in therapy solely to talk about our dx/disability.

We may be managing our symptoms fine and be there to talk about work or family or our significant other. Don’t assume everyone with a disability or chronic illness is entirely focused on that aspect of their life. We have other shit going on just like everyone else. If you haven't worked with many clients with disabilities or complex medical challenges, 1. I strongly urge you to ask yourself why that is and consider how you can make your practice more intentionally inclusive and welcoming to all abilities and 2. Check your own internal biases. What messages about people with disabilities have you internalized, even on a subconscious level? Be willing to do the work. Don't make your client do it for you.

2. Focus on us as a whole person.

How a person chooses to relate to their diagnosis or disability can vary drastically from one person to another. Some people feel it is extremely important to embrace their diagnosis as a part of their identity. Others choose not to acknowledge it more than is absolutely necessary. It is crucial to allow us to decide the degree to which we want to own our diagnosis and offer the space to explore that without judgement. It may be helpful to create opportunities to explore facets of our identity beyond our disability or diagnosis, without the pressure or judgement to embrace or own any one part of ourselves more than another.

3. Avoid toxic positivity.

This one came up multiple times. As mental health professionals, often the goal is to "fix" the problem at hand, and when someone comes in with an illness or disability, it can be easy to view that as the problem to fix without looking at the whole picture.

“Don’t try or expect to cure us. I am a big fan of incorporating acceptance into therapy. I’ve had people in the mental health realm very focused on eliminating symptoms and will expect me to do x, y, z and are almost disappointed when I’m not better (and it feels like the disappointment is aimed at me.)”

Don't minimize what we're experiencing or try to convince us it "isn't so bad". That's not for you to decide. Sometimes shit just sucks and we need to figure out how to accept that and move forward. Denying that shit sucks doesn't help us do that.

“We can accept these are our circumstances and still experience joy.”

Much of what my friends described illustrated a combination of minimization, invalidation, and blatant toxic positivity.?The reality is that some of us aren’t going to get better and the best you can do is help us come to terms with where we are at and what is within our control.

4. Don't diagnose or make treatment suggestions. Stay in your lane.

We have a whole team of providers for that. While it’s important to get a basic biopsychosocial history, do not dwell on the medical stuff if it isn’t immediately relevant. It is so exhausting to rehash all the details of each test and visit if it isn’t pertinent to the conversation at hand.?If you do need access to our medical information, be transparent about what you're looking for. It may be something we've already ruled out or explored and we can avoid wasting both of our time.

5. Allow for some flexibility with scheduling and cancellations.

While we completely understand that cancellation policies exist for a reason, not only do flare ups and symptoms appear unexpectedly, but we are also trying to manage a whole calendar of appointments and sometimes transportation can be unreliable and unpredictable. So know that if we're late or have to cancel at the last minute, we're probably as frustrated as you. Work with us to develop a system to navigate this. We understand that you, and all of our other providers, are expected to cram as many patients/clients in during the day as possible, but allowing for some flexibility in your schedule & cancellation policies can make a huge difference to clients who are already struggling.

“Things that seem simple to you, aren’t always simple to us. Chronic symptoms (like nausea or pain) can make it really hard to even schedule that next appointment or do some lifestyle change. Sometimes we are just trying to survive.”

6. Show (genuine) empathy, not sympathy.

On the opposite end of toxic positivity, do not wallow with us or feel bad for our circumstances. We should not at any point have to comfort you. One friend also shared that for a professional to try to relate to what they are going through, trying to analogize their situation to something they've experienced, or even attempting to compare their situation to another client’s situation can be perceived as invalidating or minimizing. ?Sometimes there is an urge to assure the client they are not alone, but in doing so you show that you're already viewing them them from a preconceived lens, you risk pushing them to compare their experiences to someone else’s, and potentially even make them feel guilty for whatever emotions they’re experiencing at the time. ?

7. Honor our self determination.

It is so important to acknowledge what our goals and expectations are regarding what we hope to get out of our time together. I strongly urge you to consider your own internal biases and think about what you believe about folks with disabilities and chronic illnesses. Then challenge those. Having worked in the field of sex education, one common misconception is that this population is inherently asexual, so issues of sex and intimacy as well as potential discussions about having children are often dismissed entirely. Just like with any client, do not assume you know what is best for us. Help us set goals that align with our abilities, values, and priorities and work with us to find ways to achieve those.

8. Acknowledge that all bodies work differently.

Thinking about the mind-body connection, for example, typically we talk about our heart racing or our palms sweating, but for someone with dysautonomia, those may be typical every-day symptoms. We may need help identifying the difference between an emotional reaction and a physical symptom.

“Mental and physical health are intimately intertwined. What happens in the body affects the mind, and vice versa. But for those of us with chronic illnesses/disabilities, we’ve almost undoubtedly heard ‘if you fixed your anxiety, your stomach wouldn’t hurt’ etc. So when addressing the bidirectional relationship between the mind and the body, therapists need to be aware of this and realize this is a sensitive area and many of us have trauma around this. And while reducing anxiety might help with some symptoms, it will not cure us.”?

9. Understand systemic barriers that may impact us.

I don’t have to explain to you the complexities of navigating financial assistance programs like disability and social security, or even the difficulties associated with asking for accommodations in school or the work place. Finding transportation, making sure insurance covers what we need, getting to and from appointments, finding adequate providers. It’s exhausting and never-ending.

On top of that, we may also have to rely on other people to provide some of things we need, despite the quality of our relationship with them. This can include significant others, family members, even nurses and other medical staff.

“I’m forced to maintain contacts and relationships I don’t want and aren’t healthy or even safe (at times) to have the resources I need to survive now. That’s yet another thing is sometimes you don’t have the ability to get away or cut off people you should because they provide resources you need.”

10. Meet us where we're at and walk beside us.

Depending on where we are at in our diagnostic journey, managing the complex intricacies of our care, or even just coping with the constant and unpredictable ebb and flow of our own health, we may need different things from you. We may come to conclusions and make connections at our own pace. Help us develop psychoeducation skills to do so just like you would any other client, with the understanding there may be other variables to consider. We may still be processing the grief of losing various abilities. We may be trying to adjust to new medical devices or the way our bodies look now. We may be trying to navigate relationships with people and figure out how to ask for what we need without feeling burdensome. Just be willing to meet us where we are and go along on the journey with us.

“Don't walk in front of me…I may not follow. Don't walk behind me, I may not lead. Walk beside me…"

Please keep in mind this is certainly not an all-inclusive list, but rather the beginning of a much larger dialogue. This is some of the specific feedback I received from the people trying to access these services. In general, we need to do better to improve the overall accessibility of mental health resources for this population and beyond. The fact that my graduate program at a large state university didn't address it in any capacity is concerning, but not unique. It's not a consistent benchmark from one curriculum to the next, which just shows how little we as a society prioritize people with disabilities and complex medical challenges.

I would love to see an increase in intentional collaboration between mental health and physical health organizations. Currently we are operating in silos, but by doing so, we fail to support folks experiencing some significantly traumatic physical events by neglecting to address the emotional and psychological impact these events are having on them. Rates of depression and anxiety are significantly higher in populations with chronic illnesses and disabilities, and while there is evidence that this is a cross-directional relationship, we continue to function as if there is no relationship. A patient from the UK shared that the two most important players on her care team throughout her treatment were her gastroenterologist and her psychologist, which perfectly illustrates the important of acknowledging one's mental health during a medical event. My hope through this work is to begin to bridge the gap between these worlds and secure a place for a mental health professional on a patient's care team from the beginning, just like a gastroenterologist, an endocrinologist, or a hematologist. We must begin to care for the whole patient, body and mind.

If you've read this whole thing, please do not hesitate to connect with me if you have thoughts, questions, or ideas as to how to begin to bring these two worlds together or point me in the direction of folks who are doing it. No one of us can make these changes on our own, but something does in fact need to change.