What to Do When Some People in Your Life Don’t Believe You Are Really Sick With a Chronic Illness
There are many factors that go into the
experience of having a chronic illness or illnesses.
Of these are social factors that involve the people in your life and how they respond to your illness, its implications, and its multifaceted impact on your life.
A common challenge of those of us who have experienced notable chronic illness involves the incredulous response we can receive from various people in our life. That is, the very legitimacy or truthfulness of our illness, symptoms, and circumstances are questioned or blatantly denied due to a lack of understanding and awareness.
Here we will explore the social side of chronic illness, why some people don’t believe in the validity of chronic illness, some common labels and misunderstandings, and what to do when people in your life don’t believe you are really sick.
The Social Side of Chronic Illness
Chronic illness involves many factors.
There is the healthcare side of things where you must correctly identify what is causing your many symptoms, find healthcare practitioners who are knowledgeable and able to successfully treat your case, design an effective treatment protocol, etc.
Then there is the social side of things.
The social implications of chronic illness are not often talked about, but they are just as important to consider and give due attention to.
These factors can include:
- How one’s illness is perceived by the people in their life.
- How one’s social life changes due to their chronic illness (not being able to partake in as many activities, spend as much time with family and friends, etc).
- How one’s responsibilities and relationships are impacted as a result of their illness such as parenting, marriage, employment, etc.
Here we will be focusing on exploring how one’s illness is perceived by the people in their life and how this can be a challenging social factor of chronic illness.
Why Some People Don’t Believe in the Validity of Chronic Illness and Don’t Take It Seriously
There is a lot of confusion that surrounds many different facets of chronic illness and chronic illness sufferers.
A lot of this confusion has to do with the large amount of variance that is involved with chronic illness and similar such factors regarding symptoms, treatment, and more.
Here we will explore some of these factors.
When it comes to sickness or being ill, it is often thought of as something that happens and then goes away. That someone gets sick and then they get better in a relatively short period of time. You stay home from work or school for a few days to nurse your illness and are back to feeling “100%” again pretty soon, and subsequently resume your normal daily activities.
This isn’t how it works with chronic illness. Chronic illnesses develop, and stick around. The symptoms appear, and usually worsen as time goes by. The illness could have also been present since birth.
The sufferer’s daily life is greatly affected, because they don’t “bounce back” from their illness after a week or 2, they are dealing with a slew of often severe symptoms daily for long periods of time.
Then there is the outward appearance factor, as many forms of chronic illness are often “invisible.”
Sometimes someone can look perfectly healthy on the outside while simultaneously experiencing a severe chronic illness. They don’t have dark circles under their eyes, pale skin, weight loss, or any other commonly obvious signs of physical illness.
They also may have fluctuating symptoms, meaning their symptoms are worse and better at various sporadic times.
For example, there is a spectrum with chronic illness regarding the severity and scope of symptoms present. Someone can have a mild form of a chronic illness and be able function fairly well on a day to day basis.
Then someone can have a very severe form of a chronic illness and be homebound, bedridden, or similar on a daily basis for years. Then someone could be somewhere in the middle.
Furthermore, someone may or may not have been hospitalized due to their illness. The treatment measures for chronic illness are as varied as the symptoms are, as there are many many ways that someone may be going about their healing and treatment.
There can also be an ever-changing variance in symptom presentation from day to day. One day someone may have a moderate amount of energy and relatively mild set of symptoms and the next day they could have no energy and severe symptoms.
One day they may feel capable of doing certain activities such as grocery shopping, going to work, doing chores around their home, spending time with family and friends, etc and the next day only be able to make it to the bathroom and go straight back to bed.
Furthermore, there are many forms of chronic illness and chronic illness conditions that aren’t well known yet.
The condition you have may not be a household name like “cancer,” with a fairly well known set of associated circumstances.
Many people in your life may not have even heard of your condition before.
None of these aforementioned factors or elements of variance discount the validity of the condition or the validity of the experiences of the person with the chronic illness, but all of these factors can make it more difficult for people on the “outside” to understand the condition and try to wrap their mind around it.
Chronic illness can then seem strange to people who’ve never experienced it themselves.
So what happens when this is the case?
They simply write it off as untrue. Or ignore it, considering it something that doesn’t need to be taken seriously.
When people can’t understand something or can’t relate to it, they resist it.
It is much easier to deny or ignore something that you don’t understand than to try and put in the energy to try to learn more about it and broaden your perspective.
There is a lot of nuance with chronic illness…a lot of complexity…a lot of varying factors.
This makes it difficult or impossible to simply place this topic into a neat box and label it because there is too much variance.
One of the biggest steps someone can take to support someone with a chronic illness is to simply believe them.
This in itself is so huge for the person with a chronic illness because it helps to lend support to their often very challenging experiences.
Unfortunately, due to the above mentioned reasons, this can be very hard to come by for some people.
This lack of understanding can be extremely challenging for the chronic illness sufferer, as the experience of chronic illness is very much a real one and can be very severe. One’s symptoms can be many and their illness may be impacting their life in a myriad of ways.
Having some people completely discount the truthfulness or legitimacy of these experiences or choose to not take them seriously can feel invalidating, confusing, and isolating.
Some of the Labels and Misjudgments That Can Be Put On Chronic Illness Sufferers
Due to the aforementioned lack of understanding, people who misunderstand chronic illness will often develop stories to explain away the circumstance of the chronic illness sufferer, and/or place an incorrect label on the person as well.
The following are some possible and rather common examples of this:
- The chronic illness sufferer is labeled a “hypochondriac.”
- The chronic illness sufferer is said to be “doing this for attention.”
- The chronic illness sufferer is “just depressed.”
- The chronic illness sufferer is “agoraphobic.”
- The chronic illness sufferer “isn’t really that sick.”
- Many more
These are all ideas that the person saying them has found some degree of understanding within their mind, so they reach for these labels to put on the experience of the chronic illness sufferer.
That way, it makes more sense to them and they can stop there.
They don’t have to develop a broadened understanding and therefore they don’t have to put forth any more energy.
Some Tips on What to Do When People Don’t Believe You and My Personal Experiences
When it comes to explaining your illness and its impact on your life to others, your responsibility for such ends after you provide information and a general explanation of what your illness entails.
To help people in your life understand, you can send them articles and information on your illness and then subsequently explain what your illness is, its symptoms, how it impacts your life, etc. Anything that you feel will help them to understand clearly…anything that you feel comfortable sharing.
After that, it isn’t up to you to “make” them believe you.
You are not responsible for how they receive this information. Remember this.
If they do not believe your explanations or label you inaccurately as mentioned above, disallow this from negatively impacting you in any way.
Their response to you has nothing to do with you or your experience.
A lack of understanding from someone else does not make your experience invalid.
Understand this: as long as you yourself understand your illness and the circumstances surrounding it, then that is all that matters.
No one else needs to understand your own journey but you.
I can lend this advice regarding this topic because I have personally experienced all of this myself.
I had some people in my life blatantly disregard the validity of my conditions, writing them off as untrue and invalid.
At first, this was very hurtful for me and was an unexpected challenge in my chronic illness experience to overcome.
But I did overcome it.
I journaled and worked on my own personal development.
I continued to cultivate self-love, and strengthen this resolve within myself.
Self-love is absolutely huge. Once you really develop a strong foundation of self-love, you are able to meet any kind of challenge in your life from a completely different, much more empowered place.
After a while, I had completely changed my tune on how I felt regarding the misunderstandings.
They simply didn’t bother me anymore.
I finally realized that it wasn’t my responsibility to have anyone understand.
I realized that it was ok if people other than myself didn’t understand my journey…because it isn’t their journey, it is mine.
They don’t need to understand it because it isn’t their journey.
I realized that in life, regarding chronic illness, or anything else for that matter, as long as I understand, as long as I know the truth, then all is well, and always will be :).
Always remember that people are living their life through a specific lens.
This lens is biased based on all of their past experiences, their core beliefs, and their individual conditioning.
The responses people give you are filtered through this lens…so sometimes, no matter how much effort you put into explaining something, it won’t be received as you had hoped.
And this has nothing to do with you.
It has to do with that person’s biased perspective.
So remember: focus on your own understanding. You know the truth, and that’s all that matters.
Also, for more information and resources regarding how to process the potential traumatic effects of chronic illness, click here.
My Message To You
If you have personally experienced some of the above challenges, I want you to know that you’re not alone.
I’ve got your back and I believe you.
Your experiences are real and they are valid.
You’ve been through so much and you’re doing an incredibly amazing job managing everything.
There IS a light at the end of this tunnel, and you WILL heal.
Amazing things are ahead for you.
Stay the course and keep moving forward with your healing.
Focus on yourself and your healing.
You are so strong, resilient, and capable.
You’ve got this, you really do.
I’m sending you lots of love and I’m cheering you on every step of the way!
All the best to you always and with love,
Megan 💜