“But you don’t look sick”- and other challenging misunderstandings about invisible illness

Photo by Steinar Engeland on Unsplash

What does it mean to say that someone has an invisible illness? 

An invisible illness is a term that is used for any illness that others cannot overtly see, or when the disease characteristics are not readily visible to others.  People who have invisible illness often “look” completely healthy and able-bodied, but that may not actually be the case; many conditions impact what is happening inside the body without directly changing one’s physical appearance.  Many chronic pain conditions, fibromyalgia, chronic fatigue syndrome, postural tachycardia syndrome (POTS) and Crohn’s disease are among some of the most commonly noted invisible illnesses, but there are many other conditions that would fit these descriptions as well.  Some people even suggest that mental health conditions and cognitive disorders such as dementia should also be considered as invisible illnesses (I believe this is true, though there are some distinctions between invisible physical illness and invisible mental illness, which I will address in another post).

No matter what, living with an invisible illness can come with some unique challenges (and lots of unhelpful comments). In this article, I address three of the most common misunderstanding and interpersonal obstacles faced by people with invisible [physical] illness.

1.     “But you don’t look sick…”

One of the greatest challenges I have heard from people with invisible illness is that friends, family, and sometimes even medical professionals will question the validity of their symptoms and experience.  “But you don’t look sick…” is a phrase that is often directed toward individuals living with an invisible illness; after all, that is the very definition of an invisible illness.  However, it can be incredibly frustrating and disheartening for someone to be on the receiving end of this phrase, as it is essentially saying “you can’t possibly feel as bad as you say you do, because you look fine to me”.   

As if it weren’t bad enough to cause someone emotional pain, phrases like this may also lead those with invisible illness to stop seeking support from family and friends.  This is typically due to concern that they will be continually treated as is they are “making it up”, “just complaining”, or “just trying to get attention”.  This is a significant problem- not only are people with invisible illness trying to manage the illness itself, but now they must also deal with feeling misunderstood, unsupported, and alone.  These feelings can then lead to depression and further isolation.  Of course depression feels uncomfortable and overwhelming, but it can also make health conditions worse.  Scientific research demonstrates that depression has a negative impact on immune function, specifically the inflammatory response system (Dowlati et al, 2010).  Depression is also linked to difficulty keeping up with medication and treatment regimens (Ciechanowski et al, 2000; Gathright et al, 2017; Goldstein et al, 2017), and can perpetuate and increase pain (Edwards et al, 2011; Kronke et al, 2011).  None of these experiences are helpful for anyone, much less someone who is already sick. Click here to see my post on pain and depression to learn more.

2.      “Why don’t you just go to the doctor?”

This is another commonly used phrase.  While I believe that most of the time people who utter these words have good intentions, it can often do more harm than good.  Most people in Western cultures are raised to believe that when you feel sick, you go to the doctor, they run some tests, they make a diagnosis, and then they suggest a treatment; hopefully, you get better.  However, this is often not the case for people with invisible illnesses.  Many conditions such as fibromyalgia and chronic fatigue syndrome do not have a clear-cut diagnostic “test” or biomarkers that can be easily identified by a blood sample, imaging, etc. Additionally, many (though not all) invisible illnesses can impact various parts of the body, making knowing which medical specialist to seek out a challenge. 

To make matters even more complicated, the symptoms that accompany many invisible illnesses (such as fatigue, brain fog, generalized body aches, etc.) may get misdiagnosed as depression or “stress”; in some cases the person may actually be depressed, but that doesn’t always completely explain their symptoms (Kavi et al, 2016; Pederson, Gorman-Ezell, & Mayer, 2018).  Due to all these factors, diagnosis can often take months or years; it’s a process and series of appointments rather than a quick trip to the doctor.

We also need to consider the fact that medical providers are human too, and some may be guilty of saying the dreaded “but you don’t look sick”, or “but you look like you’re doing fine right now”.  I would like to believe that this happens less than it did in the past, and that medical providers are receiving more and more training in both invisible illnesses and general collaborative patient-centered care, but mishaps do still happen sometimes. If someone has received the message that their symptoms may not be real or that it’s “all in your head”, they most likely are not going to be very excited about going back to the doctor.  Take this one step further, and people may even avoid seeking medical treatment altogether if they have received this message from people within the medical community. 

Lastly, for some people with an invisible illness, even if the diagnostic process is quick or they are lucky enough to find a provider who validates their experience, that doesn’t necessarily mean that treatment is going to be easy.  In many cases, invisible illnesses are chronic, and treatment is forever (such as is the case with type 1 diabetes, most thyroid conditions, and rheumatoid arthritis).  Often times even when a diagnosis is clear, treating the condition may include years of physician-guided trial and error to find the right treatment combination.

Long story short, diagnosing and treating most invisible illness is a complex, LONG, process, and going to the doctor may bring up a lot of different emotions for people who are in the middle of this experience. 

3.      “But you seemed fine yesterday…”

There is a reason that living with an invisible illness is often referred to as a rollercoaster ride- it’s all about the sudden ups and downs.  For many people with invisible illnesses, they may have good days and bad days (or one really good day followed by several bad days).  Its not uncommon for symptoms to be better controlled one day, and the person may seem “like their normal self”, but the next day they realize that may have accidentally overdone it, or the weather might change, or no clear reason at all, and they may have to spend the day taking it easy. The challenge with this pattern and the unpredictable nature of most invisible illnesses (particularly those associated with pain and fatigue), is that the person with the condition doesn’t know which days will be good or bad, which means their friends and family really have no clue what to expect.  This can be confusing and even frustrating for friends and family, and for some it reinforces the false idea that the person is faking it, or just being lazy, or only committing to things when it suits them.  This can sometimes cause tension within relationship, or even loss of relationships in some cases.

Dealing with these challenges

If you are someone living with invisible illness and can relate to the situations above, consider the following ways to help cope

• Talk to your friends and family: Many of the challenges mentioned in this article are phrases that most commonly show up in relationships with friends and family.  However, most loved ones probably have good intentions, and they may not know that they are causing emotional pain.  If you don’t know how to tell them, or if you think they might have trouble hearing the message from you, try sending them this article and talking to them about it after they’ve had time to read it.

• Join a support group:  Even though living with an invisible illness can make you feel isolated, and well, invisible, you really are not alone.  Although exact numbers are challenging to calculate, it is safe to say that many other people are living with invisible illnesses.  It might be helpful for you to get to know other people who are going through a similar situation.  Consider joining an in-person or online support group (groups are available for both invisible illness in general and specific conditions).

• Reach out to a knowledgeable therapist: As I touched on above, living with an illness can be depressing at times.  If you feel like a support group is not your style, or you think you would be better served by talking to someone one-on-one, consider looking for a therapist who is educated on your condition and the common challenges associated with that diagnosis.  A knowledgeable therapist may be able to help you develop coping strategies, do more, and reduce depression.   Click here to look at my therapy service page, or refer to the additional references below.

References

Ciechanowski, P. S., Katon, W. J., & Russo, J. E. (2000). Depression and diabetes: impact of depressive symptoms on adherence, function, and costs. Archives of internal medicine, 160(21), 3278-3285.

Dowlati, Y., Herrmann, N., Swardfager, W., Liu, H., Sham, L., Reim, E. K., & Lanctôt, K. L. (2010). A meta-analysis of cytokines in major depression. Biological psychiatry, 67(5), 446-457.

Edwards, R. R., Cahalan, C., Mensing, G., Smith, M., & Haythornthwaite, J. A. (2011). Pain, catastrophizing, and depression in the rheumatic diseases. Nature Reviews Rheumatology, 7(4), 216-224.

Gathright, E. C., Dolansky, M. A., Gunstad, J., Redle, J. D., Josephson, R. A., Moore, S. M., & Hughes, J. W. (2017). The impact of medication nonadherence on the relationship between mortality risk and depression in heart failure. Health Psychology, 36(9), 839.

Goldstein, C. M., Gathright, E. C., Gunstad, J., Dolansky, M. A., Redle, J. D., Josephson, R., ... & Hughes, J. W. (2017). Depressive symptoms moderate the relationship between medication regimen complexity and objectively measured medication adherence in adults with heart failure. Journal of behavioral medicine, 40(4), 602-611.

Pederson, C., Gorman-Ezell, K., & Mayer, G. (2018). Assessing depression in those who are chronically ill. Counseling Today, 60(9), 38-43.

Kavi, L., Nuttall, M., Low, D. A., Opie, M., Nicholson, L. M., Caldow, E. J., & Newton, J. L. (2016). A profile of patients with postural tachycardia syndrome and their experience of healthcare in the UK. The British Journal of Cardiology, 23, 33.

Kroenke, K., Wu, J., Bair, M. J., Krebs, E. E., Damush, T. M., & Tu, W. (2011). Reciprocal relationship between pain and depression: a 12-month longitudinal analysis in primary care. The Journal of Pain, 12(9), 964-973.

Additional Resources & Reading

https://www.healthline.com/health/what-you-should-know-about-invisible-illness#1

https://www.talkspace.com/blog/what-is-invisible-illness-how-to-explain-it-to-others/

Find a Support Group*

Chronic Pain: https://www.theacpa.org/support-groups/

Chronic Fatigue Syndrome: https://ammes.org/find-a-support-group/

Crohn’s disease: https://www.crohnscolitisfoundation.org/find-a-support-group

Diabetes: https://www.diabeteseducator.org/living-with-diabetes/peer-support

Lupus: https://www.lupus.org/resources/find-support-near-you

Rheumatoid arthritis: https://connectgroups.arthritis.org/

*This is not an exhaustive list of conditions or support groups.  I do not personally endorse any of these support groups, links are provided for informational purposes only.