I was speaking to patient the other day about how my Instagram is filled with stories of people recovering, returning to normal and getting “back to their old selves”. As much as I would love to tell you this is the case for everyone – in reality. Its not. Some people really struggle… for years. I would love to tell you its all sunshine and rainbows but the reality of living with a chronic illness is – its bloody hard work! (Excuse my French!).
Having lived with a chronic illness myself (Autoimmune Epilepy and Postural Orthostatic Tachycardia Syndrome), if someone asked me what it was like to live with one – I’m not sure I would know what to say. I guess in a sense its like having to live on an empty battery. The constant guilt of being dependant on other people and the fear of letting others down, the pain of missing out on things and the unpredictability of the illness itself – never knowing when its going to rear its ugly head. In addition theres the constant battle to educate others and create awareness to what you are going through – all the while hearing insensitive comments from people uneducated about your condition.
Included below are 8 points you can tell your family and friends about what its like to live with a chronic illness such as Dizziness and Vertigo. I’m not sure this will do it justice but if this resonates with you send us an email and we may be able to help!
- This is a never ending struggle
Remember that its not fair to have the same expectations from us as you would a healthy person. Chronic illness is something that you live with everyday. When a family member or friend is unwell, you show them care and compassion – now imagine having to live like that for months, even years on end with no relief. So be mindful of those with chronic illness and cut us some slack!
- Our lives are very different from yours
In addition to the regular challenges we face from day to day we also have to cope with dizziness, migraines, nausea, balance problems, fatigue, brain fog, medication side effects, a ton of appointments, financial implications of these appointments and medications, cancelling plans because we are unwell and also trying to keep up with peoples expectations of us.
- Fatigue is very different than “being tired”
The fatigue associated with Chronic illness is difficult for those who havent experienced it to understand. Its all consuming. Healthy people cant wrap their head around what its like to be exhausted after 12 hours of sleep. Or to need to take a nap after you’ve just had breakfast. If friends and family can understand this important point, some of the snide remarks about “how can you possibly need more sleep” can be left at the front door!
- We pay the price for it each time
Don’t get us wrong, we love to catch up, we love brunch, a long phone call, a weekend away, but oh boy does it take the wind out of our sails! The time we spend doing these things is very draining and unfortunately we pay the price for the fun we have. Everytime you see us up dancing at that party, just know we will probably spend the next few days recuperating. We spend each day deciding how to best utilise our energy so we don’t “burn the candle at both ends” so to speak. What you might not think twice about we have to navigate carefully.
- If you see us “enjoying” ourselves it doesn’t mean we aren’t sick
You see a post on Instagram of us smiling and laughing with friends. What you don’t see was the vertigo attack the day before, or the debilitating migraine when we couldn’t get out of bed which lasted three days last week. People tend to post their “best selves” on social media and you don’t really get to see whats going going on behind closed doors. Remember the majority of the time people put on a false front on social media and what you don’t see was the energy that was saved up all week to go to the event, or even the convincing from my family and friends to get us to even go. Its not often people share the truth on social media. I’m sharing it with you now.
- We don’t want to complain
Most people with chronic illnesses aren’t very vocal about their struggles. Theres a big difference between being tired or dizzy every once in a while to feeling like that every day of your life. Hence we tend to keep symptoms to ourselves than come off as “complaining” but – just so you are aware we are probably struggling with some sort of symptom related to our illness everyday, we just don’t talk about it.
- Some of us live with this for the rest of our lives
With most conditions of dizziness, they tend to be recurrent (like BPPV or Vestibular Migraine) or can be chronic (like Vestibular Migraine, MdDS or PPPD). For most Vestibular Disorders there is no “cure” – they have to be managed over time. So if you decide to stick around you need to be there to handle all our ups and downs that go along with our illness. Unfortunately cancellations and disappearances may be part and parcel of being friends with us. This has nothing to do with you and everything to do with our health condition! We understand if that’s too much for you to handle but its not fair to take it personally and expect us to explain ourselves each time.
- We just want acceptance
Sometimes all we need is to be seen, heard and listened to when we are struggling. We want people to stop pretending there is nothing wrong, accept us for our disability, recognise our challenges, and maybe just give us a big hug when we need one!
If you are ready to reach out for some professional support for your chronic dizziness you can book an appointment with me online today.
