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Jenna Boswell, MS, LPC, a behavioral health consultant at the AHN Autoimmunity Institute.
The American Autoimmune Related Diseases Association (AARDA) estimates that as many as 50 million people in the U.S. live with an autoimmune disorder. Although medically recognized, the cause of most autoimmune conditions is not known and diagnosis can be elusive. Certain symptoms — like chronic fatigue, pain, bladder and bowel difficulties, cognitive issues, and dizziness — may be unpredictable and not overtly noticeable to others. For that reason, they are sometimes called “invisible illnesses.”
When individuals encounter confusion, skepticism, push-back and flat-out denial of the validity of such symptoms, it can have psychological implications and complicate efforts to improve overall health. That’s just one of the reasons that the Allegheny Health Network (AHN) Autoimmunity Institute includes behavioral health professionals as part of its integrated approach to care. I spoke with Jenna Boswell, MS, LPC, a behavioral health consultant at the Institute, to take a closer look at autoimmune disorders and invisible illnesses through the lens of behavioral health.
Emily Laubham (EL): Can you tell me about your role at AHN’s Autoimmunity Institute?
Jenna Boswell (JB): My position came from a much larger initiative by AHN to integrate behavioral care and medical care. The initial focus was placing behavioral health consultants into primary care settings, but it has been expanded into some of our specialty clinics, which is how I wound up at the Autoimmunity Institute.
EL: Many places use phrases like “integrated care,” but they may not mean the same thing. Can you describe how that works at the Institute?
JB: My team — called the care path team — includes myself, a behavioral health consultant, along with a pharmacist, a dietitian, and a social worker. We work right next to each other, so there are ongoing conversations about patient care. We’re available as needed to all patients within the Institute.
We work from two models in terms of integrated care. In the first, a patient comes in to the clinic — with or without a diagnosis — and based on a depression screening, their doctor might ask them whether they would like to see a behavioral health consultant. If so, I would be called in to speak with them right then and there.
The second model is built in to the specific care paths for rheumatoid arthritis and for inflammatory bowel disease, including Crohn’s disease, ulcerative colitis, and celiac disease. The nature of these conditions means there’s a much stronger likelihood that patients will see a care path team member during a visit to the Institute. We generally review their chart prior to their appointment to look for flags about diet, pharmacy needs, and social determinants of health.
EL: I’ve seen the phrase “invisible illness” applied to autoimmune disorders like lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and to other chronic conditions as well. What does that phrase mean to you?
JB: On the broadest level, it’s the idea that some illnesses are not easily discernible to others — there may be no physical manifestations to clearly show someone that you have an illness. Some patients encounter skepticism about their illness or symptoms because of that invisibility, which speaks to our cultural preconception that if you look good, you must feel good.
This can be a double-edged sword. For some patients, it’s important that, no matter how they feel, they put themselves together. Looking “presentable” is part of their self-care routine. For other patients, it’s just incredibly frustrating or feels dismissive to hear people respond to their ailments with, “you don’t look sick,” even if the sentiment is well-intentioned.
EL: What advice do you give patients to help counter the “it’s all in your head” argument they might hear from others, or if they start questioning themselves due to continued skepticism?
JB: Patients come to us at various stages. Some haven’t received a diagnosis, others are on the brink of a formal diagnosis, and then there are those with a long-standing diagnosis. All of them tend to have experienced what you’re talking about.
One of the most important ways to combat the voices that say “it’s all in your head” — whether external or internal — is to read and hear other people’s stories. It’s validating, especially if the first-hand account mirrors your own, and is a reminder that no, you are not making this up.
Regardless of where you are on the diagnosis continuum, I also believe you owe it to yourself to learn all you can about your illness. Empower yourself to self-advocate. Ask your provider for book and website suggestions to help deepen your understanding — talk to them about the mechanisms of your symptoms. This gives you the language to describe what you’re experiencing, and that’s powerful. There are so many benefits to learning how to give words to what you’re going through.
It’s also important to find support, whether that be through a group that involves active participation, or something online. Living with an invisible illness often has a massive impact on people’s lives, marriages, relationships, and careers. I find that people generally feel isolated, lonely, or misunderstood.
EL: Do patients ever bring a partner or relative, hoping to reinforce to the other person that their illness is real?
JB: It does happen, but if it’s about educating their partner on their illness, I generally suggest they attend a physician visit as well. Based on what’s going on in their relationship — the acuity around the interpersonal conflict — I may also suggest seeing an outside therapist where they can focus on that.
There is a vagueness associated with common symptoms of invisible illness, like fatigue, pain or depression. This can cause non-chronically ill people to think a patient’s experience mirrors their own. In fact, these things exist on a spectrum: mild, moderate, severe; one-time, recurrent, chronic. It helps my patients to use that language with their partners. So, yes, everyone experiences fatigue, but mine falls into the category of chronic and severe.
EL: Fatigue really exemplifies the misunderstandings that can come with invisible illnesses. Our culture often dismisses it as just not getting enough sleep (something you’ve done to yourself) or even laziness. How do you help patients explain that there are different levels of fatigue?
JB: A friend of mine in her first trimester of pregnancy said she was so tired that she felt like she was going to fall asleep standing up. That was a reminder to me of how I can help patients conceptualize and express what their fatigue feels like. I try to help them broaden their language and imagery to give others a meaningful and nuanced example of how their fatigue feels.
EL: With women representing about 80% of autoimmune disease cases, do you see a connection between the “invisibility” of such illnesses and the long history of women’s health issues being dismissed or women being labeled “hysterical”?
JB: Our providers at the Institute are quite sensitive to this. Women who come into our clinic with no clear diagnosis — whose charts often show they’ve already seen a number of providers with no convincing medical explanation yet — would tell you that we do take them seriously.
I approach patients with the knowledge that they have probably been dismissed for quite some time. On a broad scale, no matter what, they are going through something, and just because we cannot yet find an explanation, that doesn’t mean it’s not real.
There’s much more room for this kind of thinking in the medical field these days. For example, in the past, there was this collective attitude that fibromyalgia, which affects women disproportionately, wasn’t real, that it was just a dramatization. But today, it is a widely recognized diagnosis.
Many people with autoimmune diseases have had experiences where symptoms were dismissed, so the AHN Autoimmunity Institute puts extra focus on making sure patients feel heard and taken seriously.
EL: I love this quote from an article in The New Yorker on autoimmune disease: “I got sick the way Hemingway says you go broke: ‘gradually and then suddenly.’” Is this a common trajectory — to struggle with symptoms for a long time before seeking care or being diagnosed?
JB: On average, autoimmune patients see six doctors over a period of four years before they get a diagnosis. These diseases tend to be unpredictable or disguised as other conditions, so providers may have to do quite a bit of detective work, a lot of ruling out vs. ruling in. For the patient, the experience of presenting with symptoms for years and being the subject of a lot of speculation before a diagnosis certainly has psychological implications, including feelings of hopelessness, guilt, anger, isolation, and other markers of depression. It also allows time for people to develop poor, long-standing habits in terms of stress, sleep, diet, and movement, which, in turn, affects their health. Similarly, patients with an array of invisible symptoms may avoid care because of the frustrating nature of autoimmune diagnosis, which again means a lapse of time where certain feelings and experiences and physical issues may get worse.
EL: What are some ways you step in to help Autoimmunity Institute patients deal with the psychological and social stress they’re under?
JB: Primarily, I emphasize the importance of listening, and give them a space to be heard. In some cases, I might be helping a patient process their diagnosis, and that there usually isn’t a cure. Regardless of where they are on the diagnosis continuum, I help them think about the big picture, get curious about their illness, and remind them that it’s OK to grieve when there is a loss of capacity to work or of other functioning.
Our model is short-term intervention, so I typically don’t go past three to six sessions, but another way I help is to connect someone with ongoing services, including therapy, psychiatry, and mind-body practices like yoga, meditation, and medical massage.
The clinic as a whole is very cognizant that our patients have struggles outside of their illness. So, if I’m seeing a patient, we might discuss something completely outside of depression, anxiety, or their illness, and focus instead on a specific stressor.
I also see patients who are very aware of their depression, for example, and already receiving treatment. In that case, I just reassure them that I am available as part of their care team and they can reach me any time there’s a need.
EL: If you’ve been living with unexplainable symptoms that others dismissed, a diagnosis can be a relief in confirming that you have a real illness. But with many of these diseases, is there then frustration around limited treatment or vague treatment options that focus on lifestyle?
JB: Sure. Many autoimmune patients live in an ebb and flow of symptoms called flares. A formal diagnosis may not mean there’s a good explanation why those occur, and some suggestions for your care may be frustratingly similar to what you heard before diagnosis: healthy diet, enough sleep, regular movement, mood.
It’s important to acknowledge that frustration. At the same time, it’s valid for providers to continue emphasizing how things like stress, poor diet, lack of movement, and psychological factors can directly impact a patient’s health, including the inflammation markers used to monitor inflammatory conditions like autoimmune disorders.
EL: What are you most hopeful for in the future of autoimmune treatment and support?
JB: I’m excited about the big push for whole-person care. People have a tendency to view things like depression, anxiety, and stress as existing in a vacuum. But when a pharmacist is talking to a patient about medication management, they could also be talking about depression. When a dietitian is talking about making better food choices, these choices can impact depression. This goes back to the integrated approach at the Institute — making those connections improves our ability to help each individual.
EL: Several times, you’ve mentioned language and imagery in the context of helping people with autoimmune disorders, and invisible illnesses specifically. Can you elaborate on that?
JB: There was an understanding I came to early in my life about the value of expression and giving words and language to one’s internal experience. I also believe that the suppression or denial of certain emotions can directly impact our physical health — that our bodies tell us things that we’re not willing to know or experience consciously. There is a common phrase in psychology that says expression is the opposite of depression.
EL: Do you have a message you’d like to share with readers struggling with an autoimmune disease?
JB: My hope for all patients is that they find an acceptance of their diagnosis and a simultaneous refusal of its power over them. Their care will always be an interplay between their providers’ expertise and their own personal experience. We can choose to look at that as an opportunity for a meeting of the minds. The beauty is, if you’re willing to engage, you’re giving providers more to work with, which makes them more successful in helping you. The Institute is a place where we take people seriously, and give them a space to take themselves seriously.
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