If I Open Up to You About My Illness, Please Don't Invalidate Me


To whom it may concern,

We all know that invisible illnesses and diseases and disorders often get discredited by society as not being real and are stigmatized. We all have to fight for our voices and truths to be heard. We all have to advocate for ourselves and others who experience the same illness or disease or disorders as us.

I often wonder if I am alone in my newest experience or if others go through this as well.

 

Am I the only one who has a friend or family member who constantly and insistently proclaims that my various health issues are not that bad, that their friend or family member has it way worse than I do, simply because it is their friend or family member? However, this individual neither hears you out nor asks you about your experience, and solely sticks to their claim, that their friend or family member obviously experiences this condition worse than you do. But they really do not know and/or it may seem like they don’t care to know.

I do realize there are others out there who have it worse than me, just as there are others who have it better than me.

However, just because others vocalize, share their struggles verbally, openly share and/or show their struggling more frequently than I do, doesn’t automatically mean I don’t struggle. Just because I have become an expert at hiding my pain and daily struggle with my condition(s) doesn’t mean I do not have them. Just because I don’t constantly and loudly vocalize my complaints doesn’t mean I don’t have that condition. I have learned ways to deal and cope with this condition so I may pass as “normal,” “healthy” and “functioning.”

Likewise, just because my health issues may be worse than others doesn’t invalidate them and their health issue. It doesn’t suddenly mean they don’t struggle. It doesn’t mean that, because they can hide their illness better than I can, they are barely ill at all. It doesn’t mean that just because they are strong and can presumably handle it well, they don’t have this condition. Just because others don’t vocalize their struggles on a constant and regular basis doesn’t automatically mean they have a “mild case” of the said condition.

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I know the old adage of “the squeaky wheel gets the grease,” but not all silent wheels operate at 100 percent of their ability.

Please do not invalidate my thoughts, feelings, opinions, knowledge, experiences, suggestions, illnesses, disorders and diseases just because you know someone who has the same condition(s) as I do. Just because they are your friend or family member doesn’t automatically mean they struggle worse than I do, and it certainly doesn’t mean I don’t have it. Please stop downplaying my condition. Please stop belittling and dismissing me. Please stop cutting me off when I try to explain my truth and have my voice heard, just to tell me I do not and cannot possibly know how bad it can be… I know, I live with it, I experience it, on a daily basis.

How can you possibly know, if you never hear me out or never ask me? If whenever I try to share this with you, you stop me mid-sentence, just to tell me once more that your friend or family member has it so much worse than I do? Please just hear me out for once, at the very least. Please truly listen to me, my feelings and experiences.

Do you know what you are quietly communicating to me? Do you know the messages you are conveying to me? Especially when I try to tell you about my experiences and feelings and you cut me off and shut me down by dismissing me entirely.

You are telling me you do not believe me. You are telling me you do not respect me. You are telling me I do not know what I am talking about. You are telling me my thoughts and feelings do not matter, especially to you. You are essentially telling me I do not matter, at least not to you. That hurts, a lot!

If I am trying to share how I feel and what I am going through with you, it means I value your opinion, and our relationship is important to me.

However, if you keep treating me this way, you may end up no longer being someone who I trust or respect. I may not want to talk to you or be around you, because your lack of support and acknowledgement hurts me too much. I have enough to deal and cope with. I don’t need the added negativity to my already bleak situation due to my condition(s).

If you never listen to me or my story, then how can you honestly say your family member or friend has it so much worse than I do? Because you have no idea what I go through, what I experience or how I feel.

I am truly sorry your friend or family member has this too. I feel for them. I can relate to them, to their experiences, their pain, their feelings, their frustrations, to everything they are going through.

I understand what they are going through because I have been there or I
am currently experiencing it too.

It’s nice to know someone else understands what it’s like living with this condition. It is even nicer to know we aren’t alone and we aren’t the only one going through this.

The reason I am trying to share my truth about this condition with you is so you may understand, and so you may pass it on to your friend or family member, so they know there is another person who understands and can possibly be a source of comfort, support and a resource for more knowledge.

If you do believe us, please do not treat us as though we are complete invalids who cannot do anything. We have our good days, although they can be far and few between.

Please do not invalidate me. Just because you have accepted my chronic condition and understand there are limitations does not mean I can’t do anything at all. I still have my good days where I am able to do housework, work or even hard labor.

Do you find that this individual forgets details you tell them about your condition such as: the fact you were diagnosed, what medications you take (which is important because if something were to happen to you, an EMT or doctor or nurse needs to know your medical history, which includes the medications you take and what conditions you have), and what you can or cannot do? Do you find that they do not believe you about your diagnosis or medication until you show them your prescription(s) and/or other documents? You shouldn’t have to prove your condition exists to this individual. You shouldn’t have your condition downplayed, belittled or dismissed.

We shouldn’t have to continuously fight to have them hear us out.

We have enough to deal with just from the condition alone, plus having to prove ourselves to doctors, insurance companies, disability services and complete strangers. We should at least have enough respect and/or consideration from family and friends to not be treated with so little disregard as if we were children who don’t know anything. We are grown adults who deserve some respect. So please do us these two favors: please hear us out and please do not invalidate us.

Sincerely,

An invisible illness warrior

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Thinkstock photo via milanvirijevic.

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