Being diagnosed with a chronic illness like lupus can be a life changing thing. In my case living with lupus has presented new challenges and the first thing I did was find out as much about it as possible. Keeping an open mind is important and obviously diet and exercise play a part in managing lupus (even though conventional medicine will claim diet has little effect when it comes to lupus). Taking an active role in controlling your health makes you feel stronger when you have a chronic illness.
What is Lupus?
Lupus is a shortened way of describing Systemic lupus erythematosus. It is also sometimes called SLE. Systemic refers to the fact that the illness can involve more than one part of the body. Lupus is an autoimmune disease where (for an unknown reason) the immune system attacks the body’s healthy tissue.
Lupus is eight times more common in women than men. The causes of SLE are yet unknown. However some factors make some people more predisposed to developing it (heredity, viruses, ultraviolet light, and drugs). There are a number of people claiming the contraceptive pill was a trigger for them.
Some of the symptoms and signs of lupus include a butterfly shaped facial rash, sun sensitivity, arthritis, pleurisy/pericarditis, kidney problems, blood count abnormalities (low red or white blood cells, anaemia, positive ANA test, positive LE prep test, lupus anticoagulant) and Raynaud’s Phenomenon is common among lupus patients.
Treatments for lupus are directed toward decreasing inflammation and the level of autoimmune activity. Lupus patients can help prevent flares by avoiding stress, sun exposure and by carefully following doctor’s advice. As each person’s symptoms are different, treatment should also be tailored to the patient. Treatment should consider the patient’s age, general health, symptoms, and lifestyle. The goal of this is to prevent flares, to effectively treat them if they do occur, and to minimise any complications of medication.
Treatment for lupus includes rest, protection from direct sunlight, a healthy diet, exercise, prompt treatment of infections, avoidance of lupus triggers, and medication when necessary. Often anti inflammatory drugs (NSAIDS) are prescribed to treat joint pain, fever, and swelling, I was put on Ibuprofen. Antimalarials (such as Plaquenil) are another type of drug commonly used to treat lupus. Corticosteroids are used when lupus activity is high and the immune system needs to be suppressed. This should be a last resort really as they are strong medications and are not without side effects.
Definition of Chronic
Most illnesses are defined as being either acute or chronic. Acute illnesses like colds and viral infections come and go fairly quickly. However chronic illnesses are usually long lasting, and in the case of Lupus have no cure. It is not all doom and gloom though as you can go into remission, and many Lupus sufferers manage their symptoms well enough to feel well most of the time.
Chronic does NOT automatically mean life threatening, other chronic illnesses include asthma, diabetes and heart disease. Lupus can be unique as it varies so much in the way it manifests. One sufferer can have a completely different set of symptoms to another, and therefore many feel misunderstood and alone.
Lupus affects you not just physically, but also emotionally, socially, and sometimes even financially. The way a person might be affected by a chronic illness depends on the severity of symptoms, treatments involved, doctor-patient relationship, strength of character and support networks. It takes time to adjust to and accept the realities of a chronic illness, but many including myself find that it can lead to many positive things and is easier when dealt with a positive attitude.
The Coping Process
When you have an illness such as lupus, there can be many ups and downs. You often need to redefine what “normal” is and learn to live with lupus as best as you can.
Living well with lupus begins with understanding your illness. What you know about your condition can make a huge impact on staying well. Many find that knowledge is power and it is often the unknown which is scary.
Start by keeping a diary which records how you feel, any appointments you have, what you eat, any exercise you do and how much sleep you get every day. Sometimes certain foods can make you feel worse (in my case soy and many refined foods trigger lupus). Ask your doctor for information. Contact Lupus UK for an information pack, this is invaluable for when you tell family or friends about your illness. My parents hadn’t heard of lupus and therefore needed a thorough explanation of what it is.
I used to be the type of person who’d go out clubbing twice a week and go to work on a couple of hours sleep. This is no longer the case, I do still go out but late nights only happen on the weekend. And I listen to my body, if I need rest I take time out. However when I feel well I do as much as I can, and this has put me in good stead.
Pace yourself throughout your day, keeping a regular routine is ideal and getting adequate rest and exercise can be fitted in easily.
Don’t overextend yourself. Learn how to say no if need be, lupus patients find people ‘forget’ about their illness as it rarely manifests physical symptoms that others can see.
Take medications regularly, following your doctor’s instructions on how and when to take your medications. Communicate well to your doctor about how your treatment is going, and especially inform them of any side effects. I also told my doctor clearly that I was keen to not take any meds at all and luckily she worked with me to do this. It is best to take control of your health with the support of a professional. If your doctor isn’t helpful find another.
Eating properly is essential; this is where your diary will help lots. You will notice if you have been skipping meals or overindulging and can adjust your diet accordingly. You may need to avoid some types of food and incorporate others in your diet. If weight is a concern speak with your doctor about ways to reach a healthy weight.
Exercise regularly, if there is one thing that has helped my lupus enough for me to eliminate most symptoms it is yoga. Ask your doctor before making any huge changes to your exercise schedule. It is best to ease into exercise and concentrate on low impact forms such as swimming and walking. Regular exercise can improve strength and energy levels, and builds self-confidence. Yoga especially aids in relieving stress and depression, which can be associated with chronic conditions like lupus.
Stress is often a huge trigger for people and therefore you have a responsibility to do what you can to eliminate sources of stress. This can be quite drastic as it can involve ending relationships/ friendships that aren’t working. This can be done gently, so start off by building support networks and then work out how to deal with the stressful aspects of your life.
Doctor-patient relationship
To ensure your medical needs are met adequately it is imperative to have a good partnership with the doctor. You must feel confident in asking your doctor questions, and feel trust in their advice. I would advise you to take notes on any visits, especially as with lupus you usually have more than one thing to discuss. It can be easy to forget something during an appointment.
Your doctor should not just be someone you go to when ill; they are part of “your team” in dealing with your condition. Honesty is the key to having a good doctor-patient relationship. Patients should tell their doctor about what they can and cannot do, as well as how they feel the treatment is going. As some treatments may cause harmful side effects, it is important to inform your doctor of any new symptoms.
Do not stop or change treatments without talking to the doctor first. I came off anti-inflammatory drugs after managing my symptoms with yoga and my diet. This was a joint decision made with my doctor.
If you’ve just been diagnosed with lupus, you may want to write down some questions to ask your doctor. For example, some of the things you might want to know are:
- How will lupus affect me on a day to day basis?
- What kind of treatment is involved?
- Will it be painful?
- Will I still be able to work?
- Will I still be able to drive?
- Will my symptoms go away?
- What are the side effects of the treatments and how long will they last?
- What happens if I forget to take my medicine?
- What if the medication doesn’t work?
Your doctor is not a magician and can’t treat you if you do not communicate any problems. The more you learn about lupus and your own body, the more you’ll understand about your treatment, your emotions, and the optimum way to create a healthy lifestyle based on your individual needs.
Emotional roller coaster
Living with a chronic illness can be very emotional for family and friends as well as the sufferer. A person who has just been diagnosed with lupus may feel vulnerable, frustrated, confused, and worried about the future. For some, the situation seems unfair, “why me?” leaving them feeling angry. Others feel upset like their bodies have let them down, or even that they deserve it as some form of karma. These feelings are the start of the coping process. These feelings are normal and there are ways of bringing a positive attitude into the coping process.
It’s also very common for people with lupus to feel stress as they balance dealing with a health condition and coping with the aspects of everyday life. One important thing is to have someone who is willing to listen when you’re feeling depressed, low, frustrated or just in need of confiding in someone. Become aware of the emotions you have, accept them as a natural part of what you’re going through. Do not be afraid to express your emotions as often hiding your condition from loved ones can lead to more stress (I took six months to tell my parents about my lupus).
Maintain normal activities and hobbies
Stay in touch with friends and family. Don’t shut yourself away from the
world, I have a friend who has meningitis and uses Facebook to communicate with friends and keep busy.
Work is often a saviour for people who have lupus, spending the day with people who are well draws the focus away from your illness. If you find there are things you no longer can do, discuss with your doctor ways of getting round these obstacles. You can even find something new to enjoy, such as a photography class or aqua aerobics!
Keep in mind that your mental health can directly impact your physical health and vice versa. Denial, anger and frustration need to be dealt with and keeping these emotions pent up will not help.
For some speaking to a close friend, or even other lupus patients in forums can be enough. Others may need counselling, which can be helpful in developing coping skills, including relaxation techniques. Sometimes, a support group is best- talk with your doctor about the route that might be best suited for you.
Focus on how well you feel, rather than how bad. This can seem like a small difference, but when you start your day with a positive attitude your body follows your mind. If you focus on what you can’t do it can become depressing and overwhelming. Be confident that this is not going to take over your life, only you have control in how to deal with lupus. See it as a day by day learning process and you’ll be amazed at how much better you feel.
Take care of yourself, and seek help when needed. Don’t feel alone, there is so much online and offline support available.
Keep things in perspective
It’s easy to revolve your life around lupus, especially during the initial diagnosis. Never forget that lupus is only a small part of who you are, and the brighter your enthusiasm and love of life the more likely it is that you will go into remission. I would advise reading about the law of attraction. Your thoughts can shape who you are, so be vibrant, healthful and full of life. These happy thoughts will help you be strong and to put some perspective on your life.
Personally I would say getting lupus has led me to bring some hugely positive changes in my life. I am surrounded by loving and fun family and friends, I have slowly moved away from negative people who zapped my energy. My diet has never been better, my skin is very grateful! I exercise a lot and have more energy than I did ten years ago. I would probably not have looked into yoga if I hadn’t have got lupus, and would have missed out on learning how to balance my body, mind and spirit. I also have a renewed passion for life now I know not to take my health for granted. There are many examples of people who state that getting an illness was the best thing that could have happened to them as it made them stronger. I am one of them.
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