Baroness Nicola Blackwood had been misdiagnosed with ME/CFS before it was determined she had Ehlers-Danlos Syndromes (EDS) with migraines and PoTS.
By Johanna Thomas-Corr, The Times, 08 July 2019.
Extracts:
At 39 the Conservative peer Baroness Nicola Blackwood of North Oxford is 30 years younger than the average member of the Lords. But as well as being the youngest member of the second chamber, she has another distinction — last month she made headlines for fainting at the despatch box.
It happened three weeks ago when, in her capacity as junior health minister, she was answering a question on the outbreak of listeria in hospitals. Looking peaky, Blackwood began to repeat the same phrase about food provisions before alerting other members: “I apologise. I’m going to faint. I’m going to faint.”
Ehlers-Danlos Syndromes
The collapse wasn’t a clever strategy for avoiding a difficult question. Blackwood suffers from a rare genetic condition called Ehlers-Danlos syndromes (EDS), which has made any sort of political career challenging.
Caused by a collagen-production defect, EDS can result in hypermobility, migraines and chronic muscle and joint pain.
As a result of EDS, Blackwood has also been diagnosed with postural tachycardia syndrome (PoTS), an abnormality of the autonomic nervous system, which controls breathing, digestion and the heartbeat.
This time she was “fighting off flu”. Infections play havoc with her blood pressure, meaning she can get “much sicker than everyone else”, but she has learnt how to anticipate and prevent these collapses. However, with such an urgent problem facing the NHS, she had not wanted to call in sick.
“That’s why I conked in the chamber, because I should have taken time off, and I didn’t, and it’s all my own fault,” Baroness Blackwood.
She experienced her first symptoms at seven, when she suffered an asthma attack and had to be rushed to hospital at night by her medic parents. Her father was a consultant cardiologist, her mother a nurse.
Home Schooling
She continued to get weaker throughout her childhood, but no one could diagnose the problem. At school she learnt that “you have to have a stiff upper lip because you don’t want to be perceived as weak. You want to make sure you can still achieve”.
By the age of 17 she was barely able to climb stairs because of severe muscle pain and problems with her heart rate and blood pressure. One doctor told her parents that she wouldn’t be able to go to university or hold down a normal job. But home-schooling helped her through her GCSEs and A levels, and she won a place at St Anne’s College, Oxford, to study music.
No matter how determined she is, she says: “Mind over matter only goes so far and you end up in hospital. Psychologically there were times when I did think, ‘Shall I just give up and accept the fact I shall lie on a bed of pain and never go forward,’ but I wasn’t really brought up like that.”
“I was trying to manage all those moving parts with a fluctuating health condition and hide it from everybody, except my closest family. I realised it wasn’t working particularly well and my health deteriorated,” Baroness Blackwood.
Fluctuating Health
Having had various wrong diagnoses — including chronic fatigue syndrome/ME — Blackwood finally found a doctor, who himself had EDS. Until that point she had always felt “like a hypochondriac”.
But her health “got worse before it got better”. It took a long time to fine-tune her medication and lifestyle regime. At first she was having 32 injections in her head every few months for her migraines.
“You think ‘I’m the unluckiest person in the world’ and then you realise it’s just one thing. It makes perfect sense,” Baroness Blackwood.
She kept the illness secret until she fainted in the presence of Tom Newton Dunn, the political editor of The Sun, in the 2015 general election and was forced to come clean.
Illness Management
She fears that “the trope of weakness” is more readily attached to women. “It’s been instructive how the public have reacted to the prime minister with her diabetes. Some have thought it’s a good thing and others have seen this as a sign of weakness.”
Yet Blackwood is determined to show illness and high-profile jobs are not mutually exclusive. She controls her symptoms with a fine-tuned holistic regime, combining medication, physiotherapy, diet and Pilates (yoga overstretches the ligaments and causes her muscles to go into spasm).
Mercifully, she no longer has to have the injections for her migraines, but she does “titrate” herself daily. She pulls out her phone and shows me the app she uses to monitor her heart rate.
Does she ever get to slow down? After she lost her seat in the last election her Instagram feed was wall-to-wall Mediterranean holidays, trips to Glyndebourne and skiing. However, since she’s been appointed to the Lords, the pictures are of her visiting hospitals.
Westminster, she concedes, is “not a great environment for your mental health or your physical health, especially at the moment. But we are as a government and a parliament trying to solve one of the biggest challenges that we have faced as a nation”.
Nevertheless, she says she couldn’t live with herself if she didn’t try to make it easier for patients with rare diseases to get an early diagnosis and help to create a care system that is easier to navigate.
“Each day I look at what I have in the diary and make a judgment about whether I really have to do it,” she says. “If the person I’m going to see or the speech I’m going to give is something that needs to be done more than I need to have a rest, then I take the hit. That’s what I signed up for and I did it consciously knowing that sometimes it’s not going to work out perfectly for the good of my health.”
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