More than embarrassing…

We’re all familiar with the reminder letters and campaigns urging us not to miss our cervical smear test. We are rightly told how important they are in detecting cancers early. I’m glad these tests are available. I am also happy that we are educated on why these tests are so necessary. However, I find myself increasingly frustrated with the messaging.

Gloved hand holding a clear speculum

So often when a person or organisation wants to encourage people to attend cervical screenings they focus on how easy it is. We’re told it is silly to be embarrassed and it will be over in a flash. Don’t risk your life over 5 mins of feeling awkward is repeated. Smear tests are confidently declared to be not painful. Just a little discomfort, nothing to worry about. While that might be true for lots, it is not full the picture. The patronising assumption that people miss smear tests because they’re self-conscious is harmful. Many people have valid reasons for their reticence. Addressing those issues would be a more effective way of increasing uptake numbers.

Research from Jo’s Cervical Cancer Trust and Rape crisis revealed that 72% of women who have experienced sexual violence have skipped or delayed a smear test. When you consider that at least 1 in 5 women have been sexually assaulted you can begin to understand the scale of the issue.

Birth trauma & pregnancy loss also impact a significant portion of those who require smear tests. Gynae exams & cervical screening require being in vulnerable positions that can trigger a trauma response. Recent research is finding that baby loss & birth trauma often results in PTSD. So, it’s easy to see why a smear test would be not a easy exam for those who are affected.

There are also medical conditions/physicalitys that can make a smear test very difficult. Conditions like ,vaginisimus, endometriosis, cervical ectropion and more can make smear tests painful or difficult. Cervical position, vaginal dryness, menopausal changes and FGM can also impact how a smear test feels.

Trans men may find smear tests hard for all obvious reason. Dysphoria, stigma, discrimination and more. I’m sure everyone can understand how having to deal with any or all of those things is a frightening prospect. It can also be difficult to access information; trans men may not be invited for cervical screening, there is confusion about who requires the test etc. Of course this may be combined with any of the other issues on this list.

This is by no means an exhaustive list. I just want to be clear that there are many real reason for a person to avoid cervical screening. That being said, how can we make it easier? Well, there are actually a lot of accommodations you can ask for. I don’t see this talked about enough, so I wanted to share that information.

Before I get into the details, I want to be clear that you do not have to disclose anything you are not ready to discuss. You can ask for accommodations without revealing your trauma.

Before the Test

You can ask you GP to take your name off the automatic reminder list if those letters are distressing.

Ask for the test to be performed by a person of your preferred gender.

If you have an established relationship with a Dr/Nurse you can ask to have them do your smear test.

Make an appointment to talk about the smear test. Discuss anything you need to talk about. Be that how the test is done, why is it done, your fears, worries etc.

Request a double appointment to allow time breaks, extra time.

Plan what you will do after the test. You may not feel up to returning to work or you might not want to be alone.

The Test

Take an emotional support person to the appointment.

Request a chaperone be present for the test.

Ask to talk through the ‘mechanics’ of the test before you start. Have the Dr/Nurse show you the instruments used.

Tell the person performing the test any words or phrases that could be triggering for you. If there are words of comfort that are helpful for you ask them to use those.

Explain how heavy/light a touch you are comfortable. If there are areas you would like them to avoid touching if possible, tell the Dr/Nurse.

Ask to insert the speculum yourself.

If you are concerned about specific trauma/pain response discuss that with the Dr/Nurse. For example tell them this part of the exam is usually painful for me or I might be unable to chat/answer questions.

Agree a plan of action beforehand; what would you like to happen if you are triggered/pain is too much. You can decide on a word or sign to use if you are in distress.

Combatting Pain/Distress

Mindfulness Techniques – Exercises like naming three things you can see, smell, hear can help route you in the now.

Distraction – Play music, make small talk with Dr/Nurse, your support person.

Squared Breathing – This sometimes helps me get through acute pain/the onset of panic. Breath in for 4, hold for 4, breath out for 4, hold for 4. Repeat.

Take a comforting object. Fidget object. Scent that invokes calming feeling. Hold support person’s hand.

Discuss having medication prescribed. Things like benzodiazepines can help with anxiety, allow your body to be less tense. Maybe you need a stronger pain medication to deal with the test/after effects.

Know Your Limits

It is ok to stop at any point. If any part of the process becomes too much, stop. You can reschedule the appointment. It is ok to try as many times as you need. This test is for you. You are not obligated to fit into anyone else’s timeline or expectations.

Smear test are an important part of early cancer detection, but your whole health & well being are equally important. Shaming people or dismissing the reason for their reluctance does not help. If we are to increase the uptake rates we need to acknowledge what is actually preventing people from attending. We also need to facilitate ways to address those concerns.

If you require more support you can contact :

My Body Back Project

Rape Crisis (Helpline – 08088 01 03 02)

Action For Trans Health

Jo’s Trust

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Easy ways to support your spoonie friend at Christmas…

I often share tips to help chronically ill people manage different aspects of their lives. However, sometimes the trickiest part of the spoonie life is dealing with how those around us react to our illness. This time I thought I’d give some hints to those who know & love a spoonie.

Please don’t give us a hard time when we cancel

This applies all the time, but especially during the festive season when there are so many events & parties. We know we disappoint you when we cancel. We aren’t sick on purpose. We can’t control our flares. Trust me, we really want to be there. We are sorry we’re missing your thing, particularly if it’s really important to you. It’s fine to say you’ll miss us or you’d have loved us to be there, but please don’t get angry. Try to consider all the times we do show up for you despite being in pain or dealing with other symptoms. We already feel more guilty that you can imagine & we are incredibly grateful that you stick with us.

White txt on pink background, my brains says let’s do something exciting today. My body says don’t listen to that fool.

Take our restrictions/limitations into account when planning activities

Disabled & chronically ill people can have a whole range of needs. We really don’t have a problem answering questions when they are considerate & relevant. If you take into account accessibility needs (disabled toilets, stairs, seats, dietary restrictions, crowds etc) it is much more likely that your spoonie friends can attend. More than that they’ll actually be able to stay for the whole shebang & enjoy themselves. It is actually much easier that you think these days. Many venues are happy to help you make accommodations or already have them in place. All varieties of specialised food are commonly available. Plus I for one am often happy just to know there will definitely be a seat so I can retreat if I need to.

Take no for an answer

If we say we are too ill, we mean it. It’s not an excuse nor the start of a debate. We’ve always thought out every possible variation before deciding we can’t make it. It doesn’t help when you say we’ll feel better once we’re out. We’ll feel much worse if we push ourselves too far. We know our limits & all our responsibilities; we are the best judge of what we can handle.

No comparisons

Please, I beg you, don’t do comparisons. Getting upset because we went to so & so’s birthday, but can’t come to yours is pointless. It won’t make us any more able to attend & will just make everyone feel worse. Chronic illness is a crap shoot. We never know how we will feel on any given day. We might have been the life & soul at dinner last week, had a ball with the wee ones on Tuesday & unable to move without crying on Thursday. There is no predicting how chronic illness will behave. The things we don’t attend is not linked to how much we wanted to be there.

Siamese cat on blue background with txt, no pain no gain. Chronic illness is not a competitive sport.

Bonus Tip

Don’t tell us we can do anything we put our minds to. We absolutely can’t & this is a shitty reminder. It’s not inspiring, it’s dismissive.

Your spoonie friend loves you. They are delighted that you are on their life and they are doing everything they can to be reliable & fun & supportive. Please cut us a little slack.