On Monday, I discussed how we inadvertently become leaders when we go public with our chronic illness diagnosis. We may not ask, nor want the responsibility, but it inevitably happens. Therefore, we face the questions: should I lead? Do I want to? and what example should I set?
Living with a chronic illness in the United States is becoming a more common occurrence. Because of this uptick, it is becoming more common to know someone affected with a chronic disease. Let’s reflect before your diagnosis for a moment: with your symptoms, did you go online and search for answers before visiting a doctor? If you knew someone with the disease in the results, did you approach them with questions?
So often, when I answer questions about my MS to those experiencing similar symptoms, do I hear how scared they are. There’s a desire for reassurance that they don’t have MS, or that it’s not a death sentence. People are seeking a connection with a person living with an illness that is not in search results. As someone who is out with my diagnosis, my role is to comfort and inform.
I can, as can you, choose not to take on this role.
We do not owe anyone answers about our illness. We can choose to refuse to answer, advocate, or inform about the disease. Yet, it is vital to be aware that when we go public with a chronic illness, we will continually field questions until others understand our stance on the matter.
If you choose to take on the role of “local” leader and “expert” on your disease, I wanted to write this post with you in mind.
What are my Responsibilities?
If you’ve decided to be public with your illness and accepted a leadership role, there’s a set of unspoken responsibilities that come with it. I spoke briefly about this on Monday. I wasn’t aware of all of these responsibilities when I first started blogging about my MS.
As I went along in my journey, I saw good and bad examples of advocacy. As someone out with their disease, it’s imperative you set yourself apart from those who are out for the attention. You will find that there’s always someone out there who is a poor advocate for your illness. They post sensational images on social media, only focus on the negative aspects, and do not take the opportunity to inform others about the disease itself (just that they have it).
They might be considered inspiring by others, too, but look beyond the sensationalism and see the truth: they are attention-seeking and not informing. Be more responsible and educate others about your illness. The ones who are flashy and irresponsible make more work for the rest of us, so it’s important you help the cause rather than hinder it.
I want to share the responsibilities we undertake when we go public with our illness and become a token advocate for others.
You Do Not Owe Anyone Anything
First off: you do not owe anyone a response. If you are uncomfortable answering a question, decline while understanding that the person may not realize how invasive they are. There will be bad days where you cannot emotionally cope with the responsibility, so let the person asking know. If you feel like you can continue the conversation at a later point, let them know. But you do not owe anyone anything.
Everything that follows is with the understanding that you are advocating from this headspace.
Disclose your Level of Knowledge
Unless you are a medical professional with expertise in your disease, you cannot be an expert on your condition. Therefore, do not position yourself as one. What you might have is intimate knowledge based on your research and anecdotal experience with the illness. That might put you ahead of most other people who have the same disease, but there will still be gaps in your knowledge.
When people turn to you for advice, comfort, and answers regarding your illness, you should qualify your statements. I try to do this as much as possible: “what works for me,” “in my experience,” and “my disease presents this way, but it may not for you.”
As you may know, people are desperate for answers, and that’s where scam artists operate. I am not suggesting that you are one or will be one, but you must separate yourself from them.
You may find that a particular diet worked for you in managing your symptoms, but do not say that it’s the only way to handle illness. You don’t know what worked: the stress-relief in taking control, balancing your diet, adding in exercise, or it coincided with a new medication regimen. It could be any of these things or something else.
Regardless, unless you performed a scientific study and have hard evidence to prove that something worked after years of research, you cannot say what worked. Instead, you can qualify it by saying: “well, when I did this particular diet, I found it helped me manage my symptoms, but that may not be the case for you.” If they try it and find success, that’s wonderful. But you do not want to provide false hope.
Be honest with those about how knowledgable you are and qualify your statements accordingly. People will respect your humility and are likely to take your advice with more weight.
Avoid Being Sensational
What I am about to say maybe controversial. Please read through the whole section before making judgments.
When you first get diagnosed with an invisible illness, there is a temptation to act in a way to make it visible, so others understand. But if you position yourself as an advocate for your disease, you will need to reign in this temptation and be honest about your symptoms. If you walked with a cane that you didn’t need, stop using it.
Let me qualify the previous sentence: do not hide your symptoms or put on a brave face. If you legitimately are struggling with your mobility or having a bad day, acknowledge it. I am referring to the moments where you may want to be hyperbolic about the symptoms you are experiencing for sympathy or reactions.
You are doing no favors acting as though your illness is worse than the reality. People will get a skewed representation of the disease. An example of this behavior is shaving your head after treatment when a short haircut will suffice. Healthy people will assume that treatment will require this extreme action when it is entirely unnecessary. So when these healthy people are experiencing symptoms themselves, they will reflect on the sensational behavior and wonder if they will have to do the same thing. It will cause undue anxiety in a situation that is already high-anxiety.
While you are not responsible for how others perceive you, reflect on how discouraging you might feel if you were on the outside looking in. Remember, there was a time when you were on the other side of the illness. If you had an extreme example of the disease while undergoing your diagnosis, how did that play into your reaction?
Being sensational serves no one but your ego. Respect yourself and respect those around you. Showing the truth of your disease, you provide a positive example of life with the disease, even if you struggle. There will be good days and bad days, so show them. When you are hyperbolic, you only confuse others about the reality of your illness.
As an advocate, you are responsible for speaking the truth of your experience. If you are unable to do this, consider holding off on your advocacy until you are ready.
Provide a Balanced Perspective (not just a Negative one)
This section is a synthesis of the last two parts: with what you know about your disease and how you manage it, be as balanced as possible. When people ask about your illness, and you feel comfortable answering, provide an objective and informational response.
Wait for a person to ask before you editorialize about the negative aspects of your illness. If someone approaches you, concerned they have the same disease as you, do not launch into all the negative from the beginning. Instead, be honest with your experience in an informative manner, and if they ask for the gritty details, give it to them.
An example: when I was pregnant, people took it upon themselves to provide unsolicited negative experiences about their pregnancy. I did not ask for these experiences, nor did I want them. These interactions served to give me undue anxiety about my pregnancy. So when I encountered other pregnant women after giving birth to Jai, I waited for them to tell me if they wanted my negative experiences. If they wanted to wait until post-partum, I respected that.
When you launch into the negative stuff without providing balance, you potentially increase a person’s anxiety. They are approaching you for information about your experience. You don’t want to lie and say it’s all positive, but you don’t want to say it’s all negative. There are silver-linings. As I said above: you want to qualify your experience but do so in a balanced manner.
Give Compassion-Based Answers to “Bad” Questions
You will get “bad” questions, aka the tone-deaf remarks relating to your illness. Someone will ask something incredibly insensitive in a poorly worded way that will offend you. It happens, and you will have the choice to approach it one of two ways: get offended and upset, or look beyond to the heart of the matter. The person may be scared and does not have the appropriate tools to ask diplomatically.
This may not be the case for everyone. Sometimes you encounter real-life trolls who are saying things to get a reaction. The key is to observe the context of the situation and adapting appropriately.
If the person asking has a history of saying outrageous things for a reaction, then get offended. Tell them, calmly, that they said something offensive, and you do not wish to continue the conversation in the direction it is heading. Walk away if you need to and prepare for future interactions in a manner that won’t compromise your integrity.
If the person does not have a history of being offensive, or you know that they only do it when they are upset, then engage your empathy. Look at the comments not as something to be upset over, but what is unsaid. They may ask about incontinence not because they want to invade your privacy, but because they are experiencing it themselves. A friend might say, “well, you look healthy,” not to offend, but because that might be the only way to compliment you, knowing you are ill.
When you deal with potentially insensitive stuff, approach it with compassion. It will prevent you from getting stressed out and provide the support the person might be asking for without using the words. After the offending remark, ask yourself, “Is this worth a potential exacerbation from the stress? Is this worth allowing the person to affect my day beyond this conversation? Do I believe they meant to offend me with that remark?“
That last question is the key. You cannot assume another person’s intention. But, you can actively decide how you respond and if you will get upset. Look at the remark on the most superficial level: not at the history you have with the person, not at the tone, and not with the implied intent. Look only at the words. When you objectively look at the question, “is incontinence an issue?” it is not necessarily an invasion of privacy, but looking for information about your disease.
Respond with compassion to these conversations. Reflect the statement: “I hear you are wondering about incontinence,” and decide how much information you want to give about your experience. You may choose to talk about your illness more broadly rather than about your symptoms: “incontinence does impact people with MS, yes.” You do not give anything away you are not comfortable with, but you reasonably answer the question. If you want to be a good advocate, you will reserve your judgments and look at these moments as opportunities to instruct and inform others.
Final Thoughts about Getting Offended
I wanted to add some final thoughts when it comes to getting offended over insensitive conversations.
I’ve read articles by people with chronic illness who discuss “what not to say,” or “if you say this to a person with a chronic illness, you’re offensive.” Anger is the primary emotion in many of these articles, and I suspect a bulk of it comes from people who have not processed their diagnosis fully or healthily. While these articles say they are for people without a chronic illness, their audience is very clearly those with one.
These articles have a purpose: to help process our interactions with the world with a chronic illness. It’s validating to see others offended by rude remarks, and that can be good. If someone does not want to advocate for their disease, these articles are great tools for validation.
However, the writers of these articles are advocates for their disease, and I get frustrated that they don’t take a moment to contextualize the insensitive comments. Most pieces end with “healthy people, don’t do this,” rather than an explanation of why the insensitivity happens in the first place. If the authors ended their articles with a line or two contextualizing why people are insensitive, it would leave the reader with the opportunity to move beyond the hurt and into a space of healing.
I encourage other advocates called to write about hurtful conversations to provide an opportunity for understanding in their articles. It will help bridge the gap between the healthy and chronically ill and give the reader a chance to heal and prevent future hurts.
Inspire and Inform
As an advocate for your disease, you may not intend to inspire others. Your intent may only be to inform and fundraise. However, don’t be surprised if you start hearing from others how inspiring you are in your fight. It’s awkward, especially if you are uncomfortable with compliments, but accept them as graciously as possible.
View it as a bonus of your work and use it as motivation to keep pushing forward. Then take the opportunity to educate others on what they can do to help fight the disease. Be balanced, read your audience, and provide the appropriate amount of information. It may not be relevant to inform each time, but do so when you can.
And that is the key to all of this: finding the appropriate time to lead others. Be balanced in your approach, offer what you are comfortable offering, and accept the good with the bad. You may not want to be a leader, but you might find you called to it after coming out with your illness. And you can do it.
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Featured photo credit: Canva