Autoimmune diseases affect around 1 in 10 people in the UK, making them far more common than many realise.
With over 80 different medical conditions included under this umbrella like rheumatoid arthritis, lupus and multiple sclerosis, these health issues are the result of the body’s immune system mistakenly attacking its own tissue.
Dr Punam Krishan, an NHS GP working alongside stairlift and home lift brand Stannah, is raising awareness of the one thing that is commonly misunderstood about autoimmune conditions – the ‘ebb and flow’ of symptoms which can lead to inaccurate assumptions and judgement.
When immune activity increases, inflammation rises and symptoms flare up. When the immune system settles again, people may feel relatively well again, leading to a fluctuation of ‘good days’ and ‘bad days’.
She says: “To loved ones, a sudden decline in health compared to being able to function the previous day, for example, can be difficult to understand as they perceive day-to-day ability to be a choice – whereas this is entirely not the case.
“As the body perceives healthy tissue as a threat, it tries to fight off the ‘attack’ by releasing proteins which triggers swelling, pain, and fatigue as a result.Infections, hormonal shifts, disrupted sleep and stress can all cause these triggers to ramp up.
Even after this phase subsides, the underlying cause of the body perceiving its own tissue as a threat remains. This is why flares can be so unpredictable.”
These conditions can impact joints, nerves, muscles and organs anywhere on the body, leading to a variety of mobility problems such as increased difficulty getting up and down the stairs, holding a grip on objects, and maintaining balance and coordination.
The GP adds that because of this, ‘invisible’ illnesses where symptoms aren’t apparent just by looking at someone can be an ‘isolating’ experience where symptoms can be ‘easily dismissed’ by the likes of ‘you look fine so you must be well’.
In fact, a report also found that 1 in 3 people living with rare autoimmune rheumatic diseases had to wait over 5 years for a diagnosis.
Common symptoms of autoimmune conditions:
- Extreme fatigue
- Joint pain and stiffness
- Muscle pain or weakness
- Brain fog
- Digestive issues
- Skin problems
- Dizziness or balance problems
- Fever or flu-like symptoms
The GP explains: “Not only do the invisible symptoms make autoimmune conditions difficult to recognise as a loved one – they are far more difficult to manage as the person experiencing them.
“If you resonate with these symptoms but are not yet diagnosed, it’s important to validate how you feel and make the first steps to getting the medical clarification and support you need.”
The ‘boom-and-bust’ cycle is a term that experts have coined to describe the common behaviours people with an autoimmune condition typically show after a flare-up subsides.
Dr Punam explains: “People will try to catch up on things they’ve missed from being unwell once they’re feeling stronger, such as social plans, work and chores. However, this inevitably leads to inflammation from cortisol as a result of stress because they’ve pushed themselves too hard too quickly.”
This cycle is easy to fall into as someone living with an autoimmune condition because of the natural desire to take advantage of a ‘good day’ after a potential long run of ‘bad days’.
“If you have a loved one with an autoimmune condition, patience, compassion and understanding is paramount. Supporting them to find ways to live with their condition and adjusting to life alongside it will feel more reassuring than trying to rally against it.
“Just because they may have been energetic and ‘symptom free’ the day before, it doesn’t reduce the risk of debilitating pain effecting multiple areas of the body or extreme fatigue the next day.”
Dr Punam’s top 3 tips for managing an autoimmune condition:
- Don’t overdo it on a ‘good day’
To avoid the ‘boom-and-bust cycle’, Dr Punam explains, “it’s important to avoid over-exertion even when symptoms have subsided as this can then trigger another flare-up.
“When strength and energy have returned, make sure to still provide space for regular rest breaks and maintain a steady, realistic pace for activities through the day.
“I recommend tracking your symptoms in a diary or with tracking technology, so you can recognise patterns, adapt your day-to-day routine and have accurate expectations around your energy levels.
- Adjust your home with flare-ups in mind
Dr Punam suggests considering inclusive design features in your living space for when chronic fatigue and pain symptoms increase your risk of falls or incidents around the home. She says, “simple changes can help maintain your independence and deserved capability in your own space, even during a ‘bad day’.
For instance, adding grab rails in the bathroom for support and making sure the stairs are brightly lit can give you the assurance you need without significantly changing your home’s design and aesthetic. Fatigue and some medications can affect coordination and depth perception, so the GP also recommends considering thoughtful lighting such as at the top of the stairs with the hazard risk in mind.
There are many sleek and stylish home adaptations available, meaning you can maintain personality within your design choices whilst still having your mobility needs in mind.
- Have open conversations and speak up
As well as practical insight, the GP also advises on the importance of emotional support: “Being brave enough to open conversations around symptoms, energy levels and limitations can really help you feel comfortable to ask for support when you need it.
“Regularly checking in and reminding them of the fluctuating nature of an autoimmune condition can lift the pressures you may feel to push through. Remembering to manage your condition at your own pace while speaking up on ways others can support you is key.”
“Support groups for those living with autoimmune conditions can also combat the feeling of isolation, helping you to connect with people who can understand in ways your loved ones may not be able to. It’s important to find something that works for you, whether that be in person group sessions or online support.”
Dr Punam Krishan concludes by urging Brits to speak to their GP if they believe they may be experiencing symptoms of an autoimmune condition, particularly if they’re affecting their daily life:
“Starting the conversation early will put you on the path to ensuring you get the support you need to manage your condition and continue to live independently.”
