Living with an autoimmune disease

An estimated four million people in the UK suffer from autoimmune diseases, which vary in degree from minor irritations to life-threatening conditions. If you’re one of them, if you have a loved one in that situation or if you’re a doctor with a patient who is severely affected by such a condition, what do you need to know about its impact on day-to-day life?

Types of autoimmune disease

The term autoimmune disease refers to any condition in which the immune system attacks the body’s own cells. These diseases are closely related to allergies and the two frequently coincide. Common autoimmune disorders include type 1 diabetes, rheumatoid arthritis, lupus, multiple sclerosis, inflammatory bowel disease and psoriasis. There are more than 80 overall, as well as a number of related conditions whose effects are relatively minor and whose origins are not well understood.

Common symptoms

Along with symptoms unique to each type of disease, there are some that many of the conditions in this group have in common. This includes swelling, a direct by-product of immune activity, and related chronic pain. Because the body is using a lot of energy to fight itself, and working less efficiently, you may feel fatigued a lot of the time. You may have problems with high or low blood pressure, dizziness, headaches or skin damage. Gut problems often accompany autoimmune disease and are believed by some researchers to be a trigger for their development.

Some diseases in this group damage muscles or joints to the point where mobility is severely impaired. If you’re affected, you may eventually need to use mobility aids to get around, or need a carer to help you with routine tasks.

Pharmaceutical intervention to delay or prevent the progression of autoimmune diseases is getting better and better, however. China clinical trials focus on a list of 121 rare diseases in which autoimmune conditions feature and some companies are working hard with Western drug developers to give hope to those living with these ailments.

Managing autoimmune disease

Most autoimmune diseases require constant management with immunosuppressants or steroids, either systemic or topical. Other medication may be necessary to manage symptoms such as nausea, swelling, chronic diarrhoea or underproduction of insulin. Patients or their carers often need to keep track of complex treatment regimens and may also have to engage in regular monitoring of weight, blood pressure, blood sugar levels or similar. Failure to stick to treatment plans is the most common cause of relapse. Patients with more serious conditions should expect to attend hospital consultations every few months and may need regular blood tests.

Coping with immunosuppression

Where it’s necessary to take immunosuppressants on an ongoing basis, there is always an elevated risk of infection. This means that you’ll need to make certain lifestyle changes to avoid diseases which, though not a serious threat to the average person, could be dangerous. Your doctor may advise you to avoid spending time with young children if you don’t have any of your own, and to stay away from people who show signs of illness. You may need to change your diet, avoiding a range of foods which, depending on the intensity of your treatment, could include anything from sushi and soft cheeses to mushrooms and black pepper, and you will need to maintain good hygiene in your home at all times. You may have to change the way you interact with animals and avoid public swimming pools or smoky environments.

Living with an invisible illness

Where they don’t affect the skin or eyes and don’t cause disability to the extent that you need to use a wheelchair, autoimmune diseases are generally invisible. This might seem easier than coping with disfigurement, and many people prefer to protect their privacy, but it creates its own set of social difficulties. Patients in this situation may, for instance, lack the strength to walk very far yet be denied access to assistive devices or priority seating because they ‘don’t look disabled.’ You might find that people don’t take you seriously when you try to explain your symptoms and that you’re accused of malingering, especially if you have a lesser-known condition about which there is little public awareness.

In general, living with an autoimmune disease presents a lot of challenges, but this is an area where knowledge is increasing rapidly, with exciting new avenues of research opening up. If you’re diagnosed with a disease like this today, it’s likely to have far less impact on your life than it would have done 20 years ago, and in another decade, conditions that are currently life-changing may be nothing more than a minor inconvenience.