How 3 types of witnesses might handle seeing a pain crisis

However well-intentioned, their reactions might harm the relationship

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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The pain from a sickle cell crisis is difficult to describe. To explain, I’d compare it to getting your hand repeatedly slammed in a car door, with that pain searing every second throughout the event. Suffering through one of those episodes is physically, emotionally, and mentally challenging. But to witness someone going through it is also difficult.

I try to stay active and independent when I’m not at my worst. When I have a crisis, however, I’m incapacitated and can’t do things for myself. I know that those seeing me entirely vulnerable and in excruciating pain must feel a lot of emotional and mental stress. This experience can affect my relationships with those around me, as they assume different roles depending on how they react.

The disengaged witness

Witnessing a crisis can be too much for some people to handle. I’ve heard patients with sickle cell talk about losing relationships because of that. Relatives have distanced themselves because they can’t take seeing their family member in pain. It’s sad and explains why many, including me, have tried to hide or downplay the pain.

I’ve experienced people not understanding my pain and not taking it seriously. I’ve learned, however, that those who leave me at my most vulnerable aren’t the best people to have around anyway. It’s essential that I evaluate those around me and understand what they can or can’t handle regarding my care.

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What Others Need to Understand About Sickle Cell Pain Crises

The overprotective witness

On the other side of the spectrum is the overprotective witness. This person has witnessed us have a crisis and will do anything to protect us so we don’t experience one again. They’ll constantly check in or remind us that we have a chronic condition. Their intentions are pure, but they can be overbearing.

I have a few of those relationships. They’re often annoying because they infantilize me, even if their intentions are good. I must communicate how I’d like them to check in with me without them being patronizing. There’s a fine line between being caring and overwhelming, which can be difficult for witnesses to navigate, especially right after they see a crisis.

The fearful witness

In this case, the fearful witnesses are paralyzed by what they’ve seen and are constantly afraid that it might happen again. They’ll fear certain activities with me because those may trigger a crisis. A couple of friends of mine, for example, were concerned about going to a party with me because I’d had a crisis the last time we went out.

That fear is understandable, as those episodes don’t just affect me, but also those around me. Witnesses may find that turning their anxiety into action can alleviate the distress. I routinely remind myself that I’m prepared for possibilities as a way to coach myself out of the fear of doing whatever I want; I plan ahead to prevent a troubling scenario from happening. Observers can do this, too. Both of us can make sure to rest and drink plenty of fluids before we share an activity.

A part of me wishes more people had the opportunity to see a crisis because I think it’d raise their empathy for those with sickle cell. But I also know that it’s hard for our witnesses, and it can affect our relationships with them when we’re vulnerable but don’t get the response we’d like.

It’s essential that we be aware that everyone responds differently to life’s low points and not everyone can handle seeing someone in great pain. The three types of witnesses above are not defined states; it’s important, however, to acknowledge and talk about them. Communication and understanding make it possible to ensure a healthy balance when managing these relationships.

Have you seen these types of witnesses in your life? How are your relationships? Please share your comments below.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.


Susumu Inoue, MD avatar

Susumu Inoue, MD

This is a really nice testament by the author. I am planning to use this narrative to educate our emergency room physicians, PAs and nurses. They do not have empathy, and unless the patients are mourning and crying, they believe that there is nor pain.

Natalie Mars avatar

Natalie Mars

My support system is balanced. Depending on my situation I call on that particular person who can satisfy my need. Family members fear every time I run a race so I would down play the distance of the race so as not to alarm them. Sometimes if I do get myself into a crises after a race I refrain from telling them what brought it on. Some friends that understand my passion for the outdoors support me, pass no judgement.


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